Fight­ing for longer life

Rotorua Daily Post - - OUR PEOPLE -

Tracy Barr-Smith doesn’t look sick. The 48-year-old an­swers the door vi­brant, laugh­ing and jok­ing about not be­ing ready. Her pierc­ing blue eyes sparkle, de­spite her heartache.

As muffins fresh from the oven sit cool­ing in the kitchen of her Tau­ranga home, Barr-Smith takes a seat next to a sun­drenched bay win­dow with hus­band Dean.

Barr-Smith has stage four metastatic breast can­cer — ad­vanced breast can­cer which has spread to other parts of the body and has no cure, yet.

Like many oth­ers, Barr-Smith hopes life-pro­long­ing drugs will keep her around long enough for a cure to be found.

“I can’t even com­pre­hend that I could be gone in five years. I don’t want to get it through my head. That’s why we need these drugs and this fund­ing and the Gov­ern­ment to step up and lis­ten.”

On Oc­to­ber 16, Barr-Smith will join hun­dreds, if not thou­sands, of other can­cer pa­tients march­ing on Welling­ton to present a pe­ti­tion to Par­lia­ment.

The pe­ti­tion calls on the Gov­ern­ment to al­low fund­ing for bet­ter ac­cess to medicines which ex­tend a can­cer pa­tient’s life.

About 300 New Zealan­ders are di­ag­nosed with ad­vanced breast can­cer each year.

Ibrance, the brand name for pal­bo­ci­clib, and Kad­cyla, also known as T-DM1 or tras­tuzumab em­tan­sine, are al­ready in use and funded or sub­sidised in other OECD coun­ties such as Aus­tralia and the United King­dom.

They are con­sid­ered “game chang­ers” by those work­ing in the can­cer field, but de­spite ap­proval by the New Zealand Medicines and Med­i­cal De­vices Safety Author­ity, there is no fund­ing for them here.

“So peo­ple are hav­ing to self­fund Ibrance with up­wards of $6000 to $7000 a month. The other one costs $10,000 a month,” Bar­rSmith says.

Ini­tially, the or­gan­is­ers hoped the pe­ti­tion would gain 25,000 sig­na­tures. It has more than 30,000.

Much of the im­pe­tus has come from Me­ta­vivors — a group of stage four metastatic breast can­cer sur­vivors who came to­gether via Face­book.

Of its mem­bers, only 1 to 2 per cent can af­ford to self-fund, Bar­rSmith says.

Oth­ers fly to Malaysia or have moved to the United King­dom where the drugs are as cheap as $39 a month, she says.

Barr-Smith doesn’t want to leave, but she also wants to live.

Those blue eyes be­gin to well up as she ex­presses frus­tra­tion that male erec­tile dys­func­tion drugs seem to get a higher pri­or­ity.

“I know for many that can be a real, real is­sue but is it go­ing to be life or death?

“For us it ab­so­lutely is. It’s the po­ten­tial to give us a longer life, stronger and health­ier life. They are get­ting closer and closer each year to a cure for breast can­cer. “It just breaks my heart.” Sliv­ers of sil­ver through Bar­rSmith’s short, dark hair sug­gest the stress of the past year.

She spent four months in agony be­liev­ing a pro­lapsed disc in her back was the cause for the pain. Doc­tors di­ag­nosed with the in­cur­able breast can­cer on Oc­to­ber 13, 2017.

Can­cer tu­mours at the base of Barr-Smith’s spine were pinch­ing nerves but were not picked up on by X-ray.

“We couldn’t be­lieve it. We were in shock. The doc­tor was in shock.”

Barr-Smith was di­ag­nosed with early breast can­cer “the size of the tip of my pinky” in 2012.

Early de­tec­tion meant early treat­ment and early re­moval. But, just a cou­ple of months be­fore cel­e­brat­ing her fifth year in re­mis­sion, can­cer came back. “It was a re­ally tough time.” Barr-Smith says she does not know how long she has now and doesn’t want to know.

“I’m not go­ing to put my­self in a box and try to deal with all of that,” she says.

Barr-Smith pauses and looks to her hus­band of 14 years Dean Barr-Smith, the man who has been her rock and at­tended her ev­ery ur­gent ap­point­ment in the past year.

She des­per­ately wants to grow old with him but knows it’s un­likely. Her only hope is the drugs. “They mean ev­ery­thing to peo­ple in my sit­u­a­tion. You can ex­tend your life for two years or more.

“Two more years is ev­ery­thing when you are faced with a tick­ing time bomb. Time is valu­able. You don’t re­alise how limited it is un­til you have been given a time frame,” she says.

“That’s two more years of mak­ing sure that my hus­band is sorted af­ter me. It’s my par­ents not hav­ing to bury their daugh­ter be­fore they die.”

The cou­ple are down to one in­come; an up­hol­stery busi­ness Dean Barr-Smith op­er­ates.

Hav­ing stopped work to join us, he sits by his wife si­lent and stoic, nod­ding his head and purs­ing his lips. When he does speak, he is an­gry — an­gry that he too has been given a life sen­tence, just a dif­fer­ent kind.

“When you’ve got Aus­tralia look­ing af­ter their peo­ple bet­ter than us, what does that tell you?” he says.

In April this year, the Aus­tralian Gov­ern­ment agreed to sub­sidise Ibrance, with a spokesman for Health Min­is­ter Greg Hunt say­ing it was a “very im­por­tant step in the Phar­ma­ceu­ti­cal Ben­e­fits Ad­vi­sory Com­mit­tee list­ing process”.

Tracey Barr-Smith says it is es­sen­tial peo­ple un­der­stand “this doesn’t just af­fect one per­son”.

“This is not an older ladies’ disease,” she says.

“These are busy women be­ing cut down in the prime of their lives. And 1 per cent of men get it too, you just never hear about them.”

There is a lot of love in the room; love be­tween the cou­ple and from Bella the dog and cats Benny and Bart who have all joined the in­ter­view.

As tears flow, Bart, the cat does what he can by jump­ing on to Barr-Smith’s lap and butts his head on her.

“Peo­ple com­plain they wish they were younger. I wish I could grow older. I’d do any­thing to reach my 60s,” she says.

“And now we’ve got an op­por­tu­nity to do some­thing to ex­tend our lives and con­trib­ute to so­ci­ety and make a dif­fer­ence.”

In Ro­torua, pen­sioner Raewyn was di­ag­nosed with ad­vanced breast can­cer in Fe­bru­ary.

She was ad­vised to go on Ibrance at the cost of $5987 a month. Of that, $701 goes on GST each time.

She says she is only alive now be­cause of those pills, which have so far to­talled $48,000.

“I’ve eaten my way through a lit­tle new car, but if I hadn’t eaten all of those pills, I wouldn’t be around to drive a lit­tle new car.”

Raewyn, who did not want her last name used, is fund­ing the treat­ment af­ter sell­ing a rental prop­erty last year.

She says she is one of the lucky ones “if you could call it that” to af­ford treat­ment.

She says her tu­mours have shrunk since tak­ing Ibrance and she’s suf­fered no side ef­fects.

“If this wasn’t work­ing, I could un­der­stand Phar­mac’s re­luc­tance, but for me, it’s work­ing re­ally well . . . what more could Phar­mac ask for?”

In Au­gust 2017, Phar­mac re­ceived its first ap­pli­ca­tion for Kad­cyla, and in Novem­ber 2017, it sought ad­vice from the Phar­ma­col­ogy and Ther­a­peu­tics Ad­vi­sory Com­mit­tee about Kad­cyla, which rec­om­mended fund­ing it with low pri­or­ity.

In Fe­bru­ary 2018 it re­ceived an ap­pli­ca­tion for Ibrance.

The com­mit­tee rec­om­mended spe­cific spe­cial­ist ad­vice be sought from the Can­cer Treat­ments Sub­com­mit­tee for both.

Phar­mac did this last month. While the sub­com­mit­tee’s dis­cus­sions have not yet been re­leased, both drugs are rec­om­mended to be funded with low pri­or­ity.

Com­mer­cial sen­si­tiv­ity has been cited by Phar­mac for its re­fusal to re­lease its pri­or­ity list of medicine fund­ing.

How­ever, it has con­firmed an ap­pli­ca­tion for fund­ing for erec­tile dys­func­tion in spinal cord in­jury pa­tients was re­ceived in 2014. This has been rec­om­mended to be given a medium pri­or­ity stand­ing.

Di­rec­tor of op­er­a­tions Lisa Wil­liams told the Ro­torua Daily Post Week­end it worked hard on a fixed bud­get to make more medicines avail­able to New Zealan­ders but: “We can­not fund ev­ery avail­able treat­ment, so we have to make dif­fi­cult choices about which medicines to fund in or­der to ob­tain the best health out­comes for New Zealan­ders.”

“There are many rea­sons why one medicine is funded, and an­other isn’t, or why one medicine might be a higher pri­or­ity for fund­ing than an­other.”

Part of Phar­mac’s de­ci­sion-mak­ing process in­cluded four dif­fer­ent as­pects be­ing con­sid­ered — health need, health ben­e­fits, costs, plus sav­ings and suit­abil­ity.

It also in­cluded three lev­els of im­pact — to the per­son, the per­son’s fam­ily, whanau and broader so­ci­ety, and to the broader health sys­tem.

“This helps us to de­ter­mine what ‘best’ means in the con­text of best health out­comes for New Zealand.”

Wil­liams says while some medicines may be avail­able in other coun­tries, the health needs, and fund­ing and re­im­burse­ment sys­tems were of­ten not com­pa­ra­ble.

“New Zealand must make its own de­ci­sions . . . ”

Min­is­ter of Health Dr David Clark said he un­der­stood calls for new can­cer drugs to be funded.

How­ever, de­ci­sions on which medicine got funded were made by Phar­mac, which op­er­ated in­de­pen­dently.

“This in­de­pen­dence means the pub­lic can have con­fi­dence in the im­par­tial­ity of fund­ing de­ci­sions. We can­not have politi­cians sec­ond-guess­ing clin­i­cal ex­perts.”

Breast Can­cer Aotearoa Coali­tion chair Libby Burgess says it is tragic peo­ple have to march on Par­lia­ment to call for bet­ter ac­cess to treat­ments “that they would get as a mat­ter of course in other de­vel­oped coun­tries”.

Re­search pub­lished last month by the Breast Can­cer Foun­da­tion New Zealand shows the aver­age sur­vival for a Kiwi pa­tient with ad­vanced breast can­cer is 16 months, com­pared with two to three years in other coun­tries such as Aus­tralia.

In the re­port, the foun­da­tion states the coun­try’s “poor metastatic breast can­cer sur­vival needs ur­gent ac­tion”.

This study iden­ti­fies five ar­eas of fo­cus for change: med­i­cal care, symp­tom man­age­ment, drugs, sup­port, and in­vest­ing in the fu­ture.

“How­ever, none of the nec­es­sary changes will be pos­si­ble with­out a change in at­ti­tude to­wards metastatic breast can­cer within our health sys­tem,” the re­port states. Foun­da­tion med­i­cal ad­vi­sory com­mit­tee chair­woman Dr Reena Ram­sa­roop says the fig­ures prove New Zealand is fall­ing be­hind the rest of the world.

“We did this study be­cause pa­tients were telling us they feel for­got­ten, and cast aside.” Back in the liv­ing room of Tracy Barr-Smith’s home, she says the Gov­ern­ment won’t know what is com­ing on Oc­to­ber 16.

Her can­cer is sta­ble, for now. While she has the strength to fight, she will.

“It’s for self­ish rea­sons. I’m go­ing to need this treat­ment my­self one day, but we are fight­ing for all of our peo­ple.”

She looks at her hus­band who squeezes her hand.

They hope that day will come.


Tracy Barr-Smith has stage four metastatic breast can­cer and is join­ing oth­ers in march­ing on Welling­ton for bet­ter fund­ing to help save and pro­long lives.

Tracey Barr-Smith des­per­ately wants to live longer with hus­band Dean Barr-Smith by her side.

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