Emily Stein is only 31 years old and is the mother of two adorable young daughters. But her life is likely to come to an end before she’s 35 if she’s unable to get the treatment she desperately needs to keep her stage IV metastatic breast cancer from growing and spreading.
Stein’s diagnosis came shortly after the birth of her younger daughter. She was told she had inflammatory breast cancer. When her baby was just four weeks old, she started chemotherapy and Herceptin treatment to shrink her 20-centimeter tumor. Then she had a mastectomy and radiation therapy.
The cancer, however, was aggressive and spread quickly to her pelvis, leaving her with no hope that she’d ever be cured—only a hope that new treatment options might prolong her life further than expected.
One of the discouraging things about metastatic breast cancer is that it often stops responding to treatment over time, leaving patients to continually switch treatments until they run out of viable options. In preparation for the day when her body no longer responds to her current Herceptin treatment, Stein has been researching other drugs that might help prolong her life.
There’s one new drug on the market, called Perjeta, which could help Stein maintain her wellbeing for a precious little while longer, probably about two years, and it’s been approved by Medsafe for those who have her type of cancer: HER-2 positive.
However, there’s one problem, and it’s not a small one. Pharmac began funding Perjeta treatments for breast cancer patients in 2017, but only for those who have never undergone chemotherapy or Herceptin—and Stein has had both. Stein and 160 other metastatic breast cancer patients who would otherwise have been eligible for this treatment have been blocked from it because of its prohibitive cost of $130,000.
“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 for people who had already had treatment,” said Pharmac director of operations Lisa Williams.
But for Stein and the rest of the 160, this isn’t good enough. “The 160 are more than just a number,” Stein said. “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.”
The infamous ‘160’ number is quickly dwindling as women succumb to their metastatic breast cancer. Some patients have been lucky enough to be able to raise the funds for the treatment, but most of them have not. And many, like Stein, are angry because they had no way of knowing they could have been eligible if they’d done something different with their treatment earlier on.
“Because I’ve already been having Herceptin, it’s not funded. I missed out by eight months,” Stein said. “Down the line when I’m needing to do more treatment it would not even be an option for me.”
Stein is determined to do everything she can to make sure 5-year-old Ada and 2-year-old Mabel remember her and to keep her husband from becoming a widower by the time he’s 35.
“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 tells her,” said Stein. “I’d love them to know where they came from and who their mum was.”
So Stein and others like her will continue to fight for access to Perjeta. Perhaps Libby Burgess, chairwoman of the Breast Cancer Aotearoa Coalition, sums it up best.
“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.”
Elizabeth Nelson is a wordsmith, an alumna of Aquinas College in Grand Rapids, a four-leaf-clover finder, and a grammar connoisseur. She has lived in west Michigan since age four but loves to travel to new (and old) places. In her free time, she. . . wait, what’s free time?