Audrey Young is the New Zealand Herald’s political editor.

Student's cancer battle: Melanoma drugs not funded by Pharmac

Auckland student Jeff Paterson owes his life to the generosity of strangers and the commitment of friends and family to raise money.

His mother, Anita Woodger, has given up her job as a cook at a childcare centre and is now a full-time fundraiser.

Since November last year they have raised more than $125,000 for life-saving melanoma drugs.

Jeff needs them every month and the dose he will get next week will cost $10,000.

"It has completely changed our lives," Anita said.

"They said 'there is nothing we can do for you unless you are willing to pay for the drugs'. We said 'of course we will' -- you can't not pay for your child -- but it threw us right into a tailspin because we had to find the funds immediately.

"You don't get any drugs until you hand over the money."

Last week, they held a fundraising dinner at the Te Atatu RSA. More than 200 people attended and $5000 was raised.

They held a sausage sizzle at Mitre 10 for three weeks running.

A garage sale they were planning in November morphed into a fully fledged gala -- bouncy castle, raffles, face-painting, craft stalls -- at Western Heights School in Henderson.

Donations from the likes of Pak'nSave and Countdown contributed to 40 gift baskets auctioned at the gala, which raised $26,000.

Jeff's father and step-mother belong to a country music club and they have held fundraising concerts.

The biggest fundraiser is the Givealittle page which, by this morning, had topped more than $85,000.

Jeff, an architecture student at Unitech, also runs a Trade Me charity account to sell donated goods.

Some were stolen in a recent burglary at his father's house in Ranui along with a guitar that had great sentimental value. He got the guitar when he was 15 and had decorated it with a little metal angel he collected from his grandmother's possessions.

Jeff has battled the effects of melanoma cancer on and off since 2009. But things turned really bad last year.

He twice developed tumours on his brain and had two operations to remove them.

When he got tumours on his lungs, he was told they were inoperable.

He was told the only treatment was drugs that had to be bought and administered in the private system.

He is now on a course of gene-targeted therapy, and is taking dabrafenib, or B-raf.

Within two weeks of first taking the drug, the tumours disappeared.

However, the family have been told the body may start rejectingthe drug after six to eight months, which is when patients go on to pembrolizumab -- commercially marketed as Keytruda by Mark Sharp and Dohme.

A generous donor from Wellington, a stranger to them, is paying for them to fly to Parliament tomorrow to help present a petition calling on increased funding for Pharmac, the Government bulk-buying drug agency, so Jeff and Anita's energy can go into living and not raising money.

"She is going to look after us tomorrow," Anita said of the stranger. "She is going to pick us up at the airport and we are going to have morning tea at Parliament, I believe."

Keytruda is available freely in Australia, Canada and Britain but Pharmac's medical specialists have given it a "low priority" in their drug-buying programme.

Health Minister and doctor Jonathan Coleman says the decision must be left to Pharmac and not to politicians.

He had been advised that Pharmac is negotiating with other manufacturers of the same class of drug that could have a wider application than Keytruda.

This morning he told Paul Henry that he would meet the petitioners at Parliament today.

"If we get more money for Pharmac in the [May 28] Budget, that gives some options. Pharmac can then make a decision. We are going through the Budget process now, but I haven't got a magic wand. It is very important that these decisions are left to Pharmac.

"I have every sympathy for these people, and I will see them on Parliament's forecourt today. We are going to see what we can do."

Dr Coleman said Keytruda worked for a third of patients.

"You have to look at the hard clinical evidence. There are no easy answers here but I have every sympathy for these people, and I will see them today. We have the Budget coming up, and that's what we have to wait for."

Jeff said his message was simple: "They have to fund it. I shouldn't have to do this. Imagine if I was worse off. I am able to do this. What about everyone else that isn't able?

"If I was older maybe I couldn't fundraise at all and then I wouldn't have a chance to get the 10 grand I need per month.

"These drugs have got rid of these inoperable tumours."

He is now well enough not just to travel to Parliament tomorrow but hopes to resume his studies in architecture.

Next week is going to an International Strawbuilding Conference in Methven that one of his tutors is paying for.

And what else is he looking forward to this year?

"Continuing to live, that's what I'm looking forward to."

- NZ Herald

Get the news delivered straight to your inbox

Receive the day’s news, sport and entertainment in our daily email newsletter

SIGN UP NOW

© Copyright 2016, NZME. Publishing Limited

Assembled by: (static) on production bpcf04 at 04 Dec 2016 02:12:59 Processing Time: 619ms