The high cost of living for patients with advanced breast cancer

It's Breast Cancer Awareness Month – a month of pink-colored messages, fellowship and fundraising. Often hidden behind reminders for women to check if their breasts are conspicuous and to have regular mammograms, are the stories of those for whom it is too late, whose most urgent need now is to prolong the life of the drug. Lindy Laird talks to Donna MacMillan, a woman from the Far North, at costs of buying a little more time.

The drug she needs to keep her alive as preciously as longer costs her mother three children, nearly $ 6,000 a month, because the drug buying agency, Pharmac, will not subsidize it.

This means that MacMillan and her husband Ewan – they have been together since their teenage years – have to work twice each to cover the costs.

"We are stupid," she says, juggling our time with work as the health and safety coordinator for Far North Roading.

"It's not fair. We both worked hard all our lives. Now we emphasize. It's a vicious circle. It's not good for me to worry all the time and run in tatters, but if we do not do it, we will not have the means to buy the drugs that keep me alive. & # 39;

MacMillan is in its second cycle of the drug Ibrance that prolongs life, which inhibits the spread of the disease.

The drug, and a few other pharmaceuticals, treat it the same way, it is widely used in other countries for the treatment of hormone receptor-positive stage 4 cancer. We see it internationally as a game-changing medicine because it extends the average life expectancy from 18 months to two years.

& # 39; & # 39; Greece! Greece does not have money as a country and its government is funding the treatment of these drugs by women with stage four breast cancer, "MacMillan said.

"Pharmac is a 25 year old system and it does not work anymore."

The cancer will eventually catch him – everyone knows – but Ibrance would give him another two years with his family. Modern drugs already help him cope with the excruciating pain of his illness.

& # 39; & # 39; When you have fourth-stage breast cancer, there is no cure, but two years older with my children and my grandchildren, it's a life for women, when Alternative is … when the … & # 39; the end of the line stumbles for the first time.

Yes, two years to continue to be the beloved wife, the mother, the grandmother of a small child, the loyal and respected colleague, and so much more.

& # 39; & # 39; I feel worthless. I have the impression that the government does not care about living or dying. That I do not count. That my family does not count. & # 39; & # 39;

But talk to MacMillan about the details of breast cancer that lead her to a frightening pace and describing with trembling voice the metastatic spread in her skull, neck, shoulders, ribs, hips and pelvis.

It's the voracity of the invader that she learned only in May of this year had come back in her body.

Now aged 45, her breast cancer was diagnosed for the first time in 2011, at the age of 37.

There is no family history of the disease. There was no warning. One day, unexpectedly, she felt like a ball.

After a double mastectomy, she underwent 25 radiotherapy sessions – in Auckland, for five weeks, then to chemotherapy (in Whangārei) and drug treatment, including the injection of a suppressor. Hormones every 28 days in the last seven years. .

Seven years of remission, then: & # 39; & # 39; On May 15 of this year, I had a scan and found that my breast cancer had reached my bones. & # 39; & # 39;

The MacMillans were able to afford two months of Ibrance, at $ 5865 US.

In addition to increasing their workload, they launched a givealittle page to pay for the next script – givealittle.co.nz/cause/donna-needs-your-help

& # 39; & # 39; The insurance is paid when there are only 12 months left to live. Who can say how long am I? If I can afford it, this medicine could keep me alive longer than that. Or, without that, I could have a few months. Who knows?

& # 39; & # 39; We are planning to reorganize our house but this idea scares me. When I go there, I want to know that we are looking after Ewan and our kids. I want them to have what we have worked so hard to get.

& # 39; & # 39; And there is the bucket list. Mine wants to go to Alaska and see the aurora borealis. I wanted to do this as long as I can remember. The other thing on my list is to go on a cruise with the whole family. & # 39; & # 39;

And there is anger, frustration, that victims of a health accident do not receive the support that accident victims receive.

To fund the two best years of a woman's life when she needs a drug like Ibrance or another called Kadcyla, it would cost about $ 140,000 to the government – or to Pharmac, the manager of public money.

It would be similar to treating many diseases in the same period, says MacMillan. And not that she wants to discriminate or point fingers, but she points out that in theory, a prisoner who would be seriously injured while trying to cross the barrier would get the public health care that he needed and that It is already $ 99,000 in the country to get him locked up. up.

Not a fair example? Well, when we can afford only one more month of extremely expensive drug treatment, and that once that stops death, the cancer spreads rapidly, it seems like little things are right.

Donna MacMillan's plea to Pharmac – "Sure, pay for my medicine so I can spend more time with my family" – is identical to that of hundreds of New Zealanders and their loved ones.

MacMillan is a strong supporter of the petition that women with breast cancer, their families, whānau and their supporters are presenting to Parliament on October 16, calling for funding for the revolutionary drugs Ibrance and Kadcyla. The Ibrance petition has about 30,000 signatures; the Kadcyla petition more than 1500.

This year, about 300 kiwi women and a handful of men will be aware of advanced incurable breast cancer, also called secondary, stage 4 or metastatic breast cancer.

Due to the nature of the rapidly evolving and advanced cancer, these 300 people will be part of the ever-changing population of the disease. Each year, as many people join the ranks, a similar number dies.

Pfizer New Zealand has implemented a patient assistance program to reduce the cost of reimbursement for eligible patients, while Pharmac examines the company's demand for funding. Pfizer NZ has requested that Ibrance be funded in February of this year and Pharmac has not yet made a decision.

New Zealand patients who meet the eligibility criteria and have already purchased eight packs of Ibrance from a pharmacy can get the next four packs for free.

Anyone currently taking this medication is encouraged to talk to their oncologist to find out more about eligibility, urged the Breast Cancer Foundation NZ.

At the same time, a report recently released by the Breast Cancer Foundation indicates that fourth-stage patient struggle is taking place off the spotlight celebrating the "success stories" of early breast cancer survival.

& # 39; & # 39; We have learned that New Zealanders with ABCs die faster than people in other countries, that many of them benefit from fewer treatments and that the health system puts them at a disadvantage of many. ways. That must change, now, "says the report titled I'm still here.

Many with advanced stage four will eventually feel invisible, forgotten, isolated. They will feel that the health system has turned their backs on them – as Donna MacMillan said.

& # 39; & # 39; I feel that it does not matter. & # 39; & # 39;

The title of the report, I'm still here, was born from a conversation with Tamara Malone, a mother of five who was diagnosed with ABC in her late thirties.

"She said [the foundation] how much her experience as an ABC patient was very different from her first diagnosis of breast cancer; how she had the impression that the health system had abandoned her long before she had abandoned herself.

"She died in January 2018, at the age of 41 years."