Women with incurable cancer talk to Anna Leask about being blocked from a drug that could give them precious time
A drug that could lengthen breast cancer sufferer’s lives has strict eligibility criteria meaning 160 women are blocked from using it unless they fork out the $130,000 themselves. Meet some of the women affected.
She’s 31, a mother of two beautiful preschoolers, a wife and an accomplished teacher. And it’s likely Emily Stein will be dead before she’s 35. When she was 29, just after the birth of her second daughter, Stein was diagnosed with inflammatory breast cancer.
Aggressive as hell, it had spread to her pelvis and was extremely advanced — what they call metastatic or incurable.
When baby Mabel was 4 weeks old Stein started chemotherapy and Herceptin treatment in a bid to shrink the cancer in her breast, by then a
20cm tumour mass.
The Blenheim mum had a mastectomy and intensive radiation.
And while that all helped, it could never cure her.
The Herceptin has ensured the cancer has not spread further through Stein’s body, and she’s as well as can be expected.
But she knows there will come a time when she needs to look for more treatment options.
One of those options is a drug called Perjeta, approved by Medsafe for women with HER-2 positive cancer — meaning they produce a protein that causes breast cancer cells to grow — in late 2016.
Pharmac started funding Perjeta in January 2017 — but only for patients who have not been treated with chemotherapy and, or, Herceptin.
The eligibility criteria meant
160 women were blocked from using Perjeta unless they paid for the treatment themselves — costing upwards of $130,000 per patient.
Stein is one of “the 160”, a number that has dwindled since as patients succumb to the disease.
Auckland detective Sarah Cato is another.
Cato, 35, hit headlines late last month as she embarked on a mission to raise the money for Perjeta in a bid to stay alive as long as possible for her wife, Keely, and 10-year-old daughter, Emma.
In just 13 days Kiwis rallied together and donated more than $106,000.
Cato was looking at starting Perjeta late in the year, but due to the lightning speed and generosity of her community her oncologist approved her for treatment this week.
On Tuesday, she had her first round of the drug that could lengthen her life by almost two years — two precious years in which she can see more of Emma growing up and, in her words, lock up more bad guys.
Although Cato hit the jackpot of human kindness and generosity, her fellow “metastatics” have not been as lucky.
Most of them will never be able to get anywhere near Perjeta.
And many of them are angry.
WHEN PHARMAC initially announced it would fund Perjeta, Stein was thrilled.
“But because I’ve already been having Herceptin, it’s not funded. I missed out by eight months,” she says.
“Down the line when I’m needing to do more treatment it would not even be an option for me.”
Like Cato, Stein is desperate to stay alive as long as she can for Mabel, her older daughter Ada, almost 5, and husband, Chris McMurtrie.
“He’s going to be a widower by the time he’s 35,” she says.
If she was able to get Perjeta when she needed it, it could have an “amazing” impact on her family.
“It will mean my children remember me,” she says.
“Ada will have memories of me if I die in the next few years but Mabel is only 2 and she will only remember me from photographs, video and what her family tell her.
“I’d love them to know where they came from and who their mum was.”
Pharmac director of operations Lisa Williams says Perjeta was only registered by Medsafe for use in patients who have not received prior treatment with Herceptin or chemotherapy.
In February 2017 it sought “expert clinical advice” from its Pharmacology and Therapeutics Advisory Committee on whether other patients could use the drug.
The 160 are more than just a number. We are women who are mothers, wives, daughters, friends, family, contributing members of society and we deserve more. Emily Stein
“PTAC deferred making a recommendation, noting that the available evidence wasn’t strong enough, or of a high enough quality, to support the use of pertuzumab [Perjeta] for people who had already had treatment,” says Williams.
This week a Pharmac spokesman said there needed to be evidence to show “it works for people who have already been treated”.
“And we’re open to reviewing any new evidence that supports this sort
of use,” he said. Today, the New Zealand Breast Cancert Foundation is calling on Pharmac to review the criteria again after a new trial was presented to the American Society for Clinical Oncology conference this week showing that the combination of Herceptin and Perjeta considerably lengthened the life of some patients.
The Pherexa trial showed that half of the patients who added Perjeta to their existing Herceptin treatment for metastatic HER2+ breast cancer survived more than three years, compared with an average survival of just two years four months for those continuing on Herceptin alone.
The foundation’s chief excutive Evangelia Henderson said in light of the trial results, the NZBCF was preparing a written submission to Pharmac, incorporating the PHEREXA trial results.
Stein was also calling on them to think hard about the women they have left behind in their decision to only effectively fund new cases of metastatic breast cancer.
“The 160 are more than just a number,” Stein says.
“We are women who are mothers, wives, daughters, friends, family, contributing members of society and we deserve more.
“We are people with lives and we’re women with our own stories and our own journeys.
“I just feel like we’ve been brushed aside.”
BREAST CANCER Aotearoa Coalition chairwoman Libby Burgess — herself a survivor of the disease that kills
about 650 Kiwi women each year — says it is disappointing the 160 is not considered for Perjeta.
The BCAC, along with the foundation, jointly petitioned Pharmac to fund the 160 in March last year.
At the time Burgess said there was “clearly a growing body of evidence to show that Perjeta is a successful treatment” for women with HER-2 Positive breast cancer and she was hopeful Pharmac would provide access for patients “who desperately need effective new and innovative treatments”.
Burgess told the Weekend Herald Perjeta may not be the right option for all of the 160.
“Not all of them want to take up the opportunity,” she says.
In her opinion, surely Pharmac could consider funding at least some of them — the ones who want to try it and are healthy enough to withstand the treatment.
“I want to see it funded — I think it’s cruel to exclude them from this opportunity.
“It’s terrible, it’s really sad.” Burgess says every woman fighting cancer deserved the chance for more time — and more quality time.
“These are women with meaningful lives — it’s really obvious the value they bring to their community.
“Women with advanced breast cancer can have incredibly energetic and healthy lives. They can contribute to their families and communities.
“Why wouldn’t we support such a warrior woman?
“A hell of a lot needs to change.”
LIKE STEIN, 64-year-old grandmother Lesley also has a lot to live for — and she wants every chance.
Lesley was diagnosed with breast cancer in 2002.
After a partial mastectomy and treatment, she thought she had beaten the disease.
What she didn’t know, until two years ago, was it had spread to her lung and would ultimately be incurable.
“I was in shock because when I initially had it I did everything,” she says.
“I didn’t have to have chemo, I didn’t have to have radiation but I did those things because it gives you a higher percentage chance of it never coming back.
“But it did.”
She is treating her metastatic cancer with a cocktail of drugs including Tamoxifen, which reduced the risk of the disease spreading.
Although the oral chemotherapy was keeping her stable, the time will come when she needs to look at different treatments to lengthen or improve
the quality of her life.
She is frustrated Perjeta, if needed, will be out of her reach.
“I’ve got a new granddaughter who is a week old — I’ve waited 40 years for this little girl,” she says.
“I’m just trying to absorb as much of her and the rest of my family as I can. Even though I’m older I still have the same things to live for.”
Lesley appreciates many people needed life-saving or life-improving drugs and there was only so much funding to go around.
Metastatic patients have just a 22 per cent chance of surviving longer than five years.
“You don't know when it's going to happen, it just happens,” says Lesley.
“We are valuable people. We are all warrior women.
“We all have value and no one is more valuable than anyone else or has less to give.”
Emily Stein and her husband, Chris McMurtrie, with their daughters Mabel (left) and Ada; Stein has ongoing treatment for metastatic breast cancer (below). Sarah Cato (left) relaxes at home with her dog, Archie