End breast can­cer post­code lot­tery

Gran Suzanne gets to see her beloved fam­ily just a few times a year be­cause she has to stay in Eng­land be­cause her vi­tal breast can­cer drug isn’t avail­able up here

Daily Record - - NEWS - BY VIVI­ENNE AITKEN

A POST­CODE lot­tery means Scots women with in­cur­able breast can­cer are be­ing re­fused a life-ex­tend­ing drug while their neigh­bours in Eng­land have been get­ting it for years.

Per­jeta, a tar­geted ther­apy for women with HER2 pos­i­tive metas­ta­sised breast can­cer, can give women an ex­tra 16 months of life – vi­tal time to spend cre­at­ing mem­o­ries wth loved ones.

It has been avail­able to women in Eng­land for sev­eral years but the Scot­tish Medicines Con­sor­tium have twice re­fused to al­low it on the NHS.

Women need to take the drug with their first treat­ment for the metas­ta­sised can­cer and while the SMC, drug man­u­fac­tur­ers Roche and the Scot­tish Govern­ment drag their heels over its ap­proval, hun­dreds of women are los­ing their chance of life.

And for ev­ery woman de­nied treat­ment, there are part­ners, par­ents, kids, grand­kids and friends who are de­nied the right to spend ex­tra time with loved ones.

The in­jus­tice of the sit­u­a­tion is also keep­ing fam­i­lies apart, with some women be­ing forced to leave Scot­land to live in Eng­land where they can re­ceive treat­ment.

Can­cer is a cruel enough ill­ness with­out adding the ex­tra pun­ish­ment of be­ing sep­a­rated from those you love most.

It is time for the SMC, Roche and the Scot­tish Govern­ment to ham­mer out a deal to give women the right to live and stop fam­i­lies be­ing kept apart when they need each other the most.

A GRANNY has been torn apart from her beloved fam­ily be­cause the vi­tal life-ex­tend­ing drug she needs is not avail­able in Scot­land.

Suzanne Hick­ling, 55, has to make do with vis­its a few times a year in­stead of be­ing able to buy a home near her son and his fam­ily in Green­gairs, near Air­drie.

In­stead of be­ing able to take her el­dest grand­child to school and spend qual­ity time with her and her lit­tle brother, Suzanne lives from week to week 447 miles away.

All she wants to be able to do is cre­ate spe­cial mem­o­ries with her son Mark, his part­ner and their lit­tle ones while she is still well enough but the drug she needs to ex­tend her life, Per­jeta, is not avail­able on the NHS in Scot­land.

And to­day, on Metastatic Breast Can­cer Aware­ness Day, she is beg­ging drug com­pany Roche, the Scot­tish Medicines Con­sor­tium (SMC) and the Scot­tish Govern­ment to en­sure the drug is made avail­able in Scot­land to stop more fam­i­lies be­ing forced to live apart.

Roche have re­sub­mit­ted an ap­pli­ca­tion to the SMC for it to be made avail­able to all who need it on Scot­land’s NHS but it is un­likely there will be a de­ci­sion be­fore the end of the year. And there are no guar­an­tees it will be ap­proved.

Per­jeta has been avail­able on the NHS in Eng­land un­der the can­cer drugs fund for sev­eral years.

But the drug, for metastatic HER2 pos­i­tive breast can­cer, has been re­jected by the Scot­tish Medicines Con­sor­tium on four oc­ca­sions.

Tri­als show it can give women an ex­tra 16 months – vi­tal ex­tra time with friends and fam­ily.

Suzanne, who lives in Hamp­shire, was di­ag­nosed with pri­mary breast can­cer in 2009 and had a mas­tec­tomy as well as cour­ses of chemo­ther­apy and ra­dio­ther­apy.

But her life was about to change dra­mat­i­cally.

Suzanne said: “It was just an off-the-cuff re­mark that I felt a bit more tired than nor­mal that the on­col­o­gist picked up on and sent me for a blood test and a CT scan. That con­firmed that I had liver and lung metas­tases. “It was a bomb­shell.” She went through chemo­ther­apy once more and when she got the HER2 pos­i­tive di­ag­no­sis, she was given Per­jeta.

Suzanne said: “I re­ally wanted to go to live be­side Mark, his fi­ancee, Mary, and my only grand­child at the time, Molly.

Suzanne was an as­so­ciate nurs­ing prac­ti­tioner help­ing pal­lia­tive pa­tients so she is well aware of what is in front of her and wants to spend qual­ity time with Molly, now four, and her lit­tle brother Rory, two, be­fore it is too late.

She said: “I know it sounds re­ally mor­bid but I just want to be prac­ti­cal. I wanted to be re­mem­bered as a happy grand­par­ent, a fun granny, not a poorly one

“When I found out I couldn’t get Per­jeta in Scot­land, it was aw­ful. My world just col­lapsed. Some­one just pulled the rug out from un­der­neath me.

“I was very emo­tional. I couldn’t see the best way to deal with things.” Suzanne now has to plan vis­its round her three-weekly treat­ment but can’t af­ford to head north as reg­u­larly as she would like.

She said: “If the drug was avail­able, I would be in Scot­land and I would be able to see my fam­ily ev­ery night if I wanted to.

“At the mo­ment we rush around on vis­its do­ing ev­ery bit of tourist stuff we can to have qual­ity time with the chil­dren. But I am guess­ing as the drug runs its course and my body doesn’t re­act as well, I won’t be able to do that as much.”

Plead­ing for the drug to be made avail­able in Scot­land she asked: “What price is a life?

“It would be amaz­ing to give my grand­chil­dren happy times. I don’t want them just to re­mem­ber hav­ing to come down to visit me when I’m dy­ing with tubes stick­ing out of me.”

CLOSE Suzanne with grand­chil­dren Molly, four, and Rory, two

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