Breast cancer drug buying time for terminal women amid push for PBS subsidy
Alison Day was given just months to live after being diagnosed with stage four terminal breast cancer but a new wonder drug has helped extend her life.
NSW
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Alison Day’s quest is not finished. The miracle drug that extends the life of women like Ali suffering stage four triple negative breast cancer was approved for use in Australia after her tireless campaigning.
And now Trodelvy is again under consideration for public subsidy to make it more affordable after initially being rejected.
Ali hopes the subsidy will be approved and her new wish is for Trodelvy to be trialled on stage three breast cancer sufferers in the hope if may offer a cure.
Trodelvy’s use to extend the lives of terminally ill stage four patients comes at a cost – $50,000 per 21-day cycle.
Some women have been forced to mortgage their homes or using their super to afford treatment.
Ali, 53, embarked on her inspiring campaign backed by the Ali’s Make a Wish campaign in The Sunday and Daily Telegraph, to have the drug approved in Australia to save the lives of other women just like her and last September she met with Health Minister Greg Hunt, who then invited drug company Gilead to fast track an application for Trodelvy’s approval by the Therapeutic Goods Administration (TGA).
Gilead has agreed to supply to a small number of women on at a reduced price of $6500 on compassionate grounds.
Ali started the drug last year when her stage four terminal breast cancer meant she was given just months to live, and has had remarkable success. The Balmain mum of two got lived to see her daughter Skye complete her HSC and be proud of her ATAR of 96.
“One round shrunk my tumours by 33 per cent, nothing has ever shrunk my tumours, ever and I’ve had many targeted therapies, three types of immunotherapies, three types of chemo, nothing worked. Trodelvy worked,” Ms Day said.
“This is an amazing drug, it is the only drug that has ever shrunk my cancer, and it has kept me stable, which is radical given how aggressive my cancer was. I am still alive because of Trodelvy. Without Trodelvy I would have died in December for sure.”
Triple negative sufferers represent the highest fatalities because hormone blocking treatments do not work.
In November, the Pharmaceutical Benefits Scheme (PBS), acknowledged Trodelvy improved survival and was superior to other available drugs on offer but refused a PBS due to Gilead’s pricing, finding: “the incremental cost-effectiveness ratio was unacceptably high at the proposed price. The PBAC considered that a price reduction would be required to achieve a cost-effective listing.”
Gilead resubmitted a new proposal, to be considered by PBAC in March. In the meantime, 25 women have been given compassionate access at a reduced price of $6500 for a three week cycle.
“A lot of women are still put off because they can’t afford the $6500 co-payment, so a lot are waiting on this submission before PBAC,” Ali said.
“Some women on it have mortgaged their homes or are using their super and they separately are hoping they don’t have to keep paying that amount.”
Adelaide mum of two Tuesday Udell, 55, has stage four triple negative breast cancer that is chemo resistant. Friends have crowdfunded so she could afford to access Trodelvy which she began four weeks ago.
“A lot of my cancer was on the surface, I had skin cancer over my right breast and lumps protruding from my neck. From my observation all the lumps in my neck have gone, they went after two weeks, and my breast that was swollen and painful has gone back to normal size and the pain has gone,” she said.
“Absolutely it is working. I hope it gets on the PBS. So many can’t afford $6500 every three weeks, it’s a lot of money. It is my last hope, it is pretty scary to just sit and wait for the cancer to kill you.”
North Brisbane mum Opal Day, 47, also has metastatic triple negative stage four breast cancer and is praying for Trodelvy to be subsided on the PBS because she cannot afford it otherwise.
“I am running out of options. I can’t afford $6500 per cycle and I just don’t have access to that sort of money,” the mother of six said.
“Even accessing my super wasn’t enough. When you get to stage four, you have two things – hope the treatment will work and you just want to have more time.”
Ali Day’s new crusade is to trial the drug on stage three patients in the hope if may offer a cure.
If Trodelvy is approved for subsidy it will be available for stage four triple negative breast cancer sufferers but Alison Day has a new wish – to trial the drug on stage three patients in the hope if may offer a cure.
“It will get approved for women at stage four who have had prior targeted therapies, which is brilliant, that is what I wanted, but the drug, at stage four, it extends life, but it could be curative in stage three cancer women. I think it is a wonder drug, but let’s do some advanced stage three trials now,” Ms Day said.
“There will be a woman like Ali Day who has advanced cancer and not responding to chemo, a version of me at stage three, while it is still curative, and will try Trodelvy and it will work and it will get rid of her tumour and she will stay cured.
“My dream is if someone had pushed this for me while I was stage three, I wouldn’t be dying. I want a trial, in my lifetime, of stage three patients on it because when I die, I know there will be somebody who was in my situation who won’t be dying because of this drug.”
Emma Williamson is one such woman who would dearly love the chance to try Trodelvy before she gets to stage four. At just 35, she has three young children she desperately wants to see grow up.
Ms Williamson was diagnosed with stage three triple negative last year in July.
“It means it’s really aggressive. I had a left breast mastectomy then I started chemo in October, but that’s the whole thing with the drug, because with triple negative it basically means it will come back,” Ms Williamson, from Mackay, said.
The surgeon basically said hopefully I might to see my kids graduate and I was like what the hell? The statistics with breast cancer are pretty good these days but with triple negative it is a different ball game.
“I don’t have any other options for anything else now.
“I‘d love to go on a trial, I’m not at stage four yet, it would be a good insurance policy that I don’t get to stage four. I’m 35 with three little kids. The cost is out of reach, we’d have to borrow money or drawn on our super. We don’t have that kind of money.”
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