Funds squeeze hurts cancer patients

Determined to be heard: Mother of two Moana Papa, pictured with her son, Devlyn Papa, 19, has stage 4 cancer.
Chris Skelton/Fairfax NZ

Determined to be heard: Mother of two Moana Papa, pictured with her son, Devlyn Papa, 19, has stage 4 cancer.

A funding squeeze means breast cancer victims are "suffering needlessly", denied access to vital drugs and treatments.

READ MORE: Health system trapped on waiting list

Experts and patients met with Health Minister Jonathan Coleman this week to lobby for new medicines available overseas, but not in New Zealand. The mortality rate for breast cases cases is 40 per cent higher than in Australia.

Around 150 women under 40 are diagnosed every year and around half would like the option of fertility preservation. This would cost $550,000, a "small investment" that experts advised would have a huge positive benefit for women.

Breast cancer is less common in men, with around 20 diagnosed each year.

The treatments is the same as for women, but men have a 25 per cent higher mortality rate than women, creating a greater demand for innovative later-stage treatments.

Also on their wish list was more clinical trials, fertility treatments for women under 40, improved access to delayed reconstruction surgery and wider treatment available to those who suffer from lymphoedema, painful tissue swelling.

But they went away with a clear message from the Government: there is no more money in the pot.

Survivor Chris Walsh, deputy chair of the Breast Cancer Aotearoa Coalition, is disappointed.

"It does quite a lot of anxiety and concern when you realise that if you lived somewhere else, you'd be getting a better treatment...[The Government's drug buying agency] Pharmac are not getting any more money and that's it. What does that say about the future?"

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BCAC want Pharmac to fund perjeta, to tackle aggressive HER2-positive breast cancer, present in around 1-5 women diagnosed. The drug is available across the Tasman and studies show it extends lifespan by more than 15 months. Another key drug, Kadcyla, approved in the US and under consideration in Australia, has minimal side-effects and extends life by almost six months.

Also available to Australians is Abraxane, a faster chemotherapy drug, Halaven, which blocks growth of cancer and given to those who have already had two courses of chemo and Afinitor, which prevents the growth of cells. And also on the wish list is a new, quicker way of administering herceptin.

New drugs, under patent, are more expensive which can mean a five year delay before Pharmac will purchase. The agency's budget is a secret, but around $795m a year is available for cancer and community pharmaceuticals.

In the oncology market, drug prices are hefty. Perjeta is one of the priciest, costing around $83,000 a year. It must also be used in conjunction with herceptin and a chemotherapy drug. Kadcyla costs even more, at $180,000 per patient – and is so expensive Britain's NHS has strictly limited use.

Among those pushing for more funding is Libby Burgess, one of the "Herceptin Heroines" who battled for two years to get the cancer drug. Access to effective medicines remains "low and slow" when compared with Australia, Canada and Britain, she says. A briefing note prepared for Coleman says this "costs lives and has a devastating impact on families."

Burgess was encouraged by Coleman's pledge to set up a high-level working group within the Health Ministry. Implementing standards of care, developed in 2013 would also be effective.

"It was good to meet the minister ... he said 'we are trying to save more money in health than spend'. It doesn't sound like there's a lot of room to move."

Ian Campbell, one of the country's leading breast cancer surgeons, agrees resources are stretched.

Women who chose to have breast reconstruction at a later date often drop off waiting lists. "There is quite variable access to delayed reconstruction in the public hospital system...The problem is that there is competition for the resource ... and the surgeons who are doing that work have to prioritise them against new surgery to deal with cancers."

He estimates the country needs around 25 per cent more surgeon for delayed breast reconstruction.

Labour's health spokeswoman Annette King said it is "shameful that a first world country would deny firstline drugs for one of the biggest killers of women. It is indicative of the squeeze that is now in health."

Coleman said he listened to BCAC's concerns. "I have agreed that the ministry will work closely with the coalition to develop a work programme to address some of the issues raised."

'WE ARE HERE AND WE ARE WORTH IT'

Crippling pain and exhaustion could not stop Moana Papa lobbying Health Minister Jonathan Coleman on behalf of 3000 women diagnosed with the disease each year.

Suffering with stage four cancer, which has spread through her bones, the mum of two rolled into his sixth-floor Beehive office in a wheelchair.

Papa, 41, from Otara, South Auckland, was there to represent Metavivors, a group of women with advanced (or metastatic) breast cancer who advocate for better treatment. Papa says: "We don't want to be left in the corner."

She has lived in the shadow of breast cancer for a decade, and was diagnosed with secondary cancer in October. "I wanted him to know we are trying to live our lives, productive lives, go to work, raise our children, contributing to society while fighting this disease. We need access to medicines, particularly ones that would prolong life or improve the quality of life.

"Some members in our group have commented that they would move to Australia if they could get these medicines. It is definitely frustrating, they wanted me to say to him: 'We are here and we are worth it'."

Papa is undergoing radiation therapy and taking "pretty powerful" drugs. "I haven't been told how long I've got. I know that down the line, these [new] drugs are going to be very important."

Papa also wants more screening and improved access to treatment for Maori women, who are 45 per cent more likely to get the diseases, and 60 per cent more likely to die from it.

"It is a real shame we are going to have a lot of motherless families because of our ethnicity," she said.

 - Sunday Star Times

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