Brushed aside

Women with in­cur­able can­cer talk to Anna Leask about be­ing blocked from a drug that could give them pre­cious time

Weekend Herald - - News -

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.”

Photo (left) / Brett Phibbs

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

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