Nicholas Jones is a New Zealand Herald political reporter.

Life-saving melanoma drug: 'People are dying' Health Minister Jonathan Coleman told

People are dying from melanoma while the Government weighs-up how much more money it could give to Pharmac, Health Minister Jonathan Coleman has been told.

In emotional scenes outside Parliament, melanoma survivors, patients and supporters gathered to present an 11,000-signature petition calling on the Government boost Pharmac's funding so it can fund melanoma drugs.

Petition organiser and melanoma survivor Leisa Renwick, standing before Dr Coleman amidst a crowd of media and supporters, said people were desperate.

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"In this country that has the highest rate of melanoma in the world...those of us with melanoma and our families are expendable.

"Only those with the means to pay can access medicines that can save our lives. The wealthy are offered treatment and the poor are sent home to die - and that's a fact."

Patients at present are having to raise hundreds of thousands of dollars to pay for life-saving drugs.

Dr Coleman told the crowd of about 100 that he understood the need for urgency, and the Government was currently looking at how much more money Pharmac could be given as part of May's Budget.

Ms Renwick, of Tauranga, presented the petition to her local MP, Simon Bridges, and afterwards said the lack of funding for Keytruda and similar gene-therapy drugs was the Government's "dirty secret", only recently exposed.

"If we don't get [the drugs] funded, people will die. It's not a matter of people will have to wait, people will be uncomfortable," said Ms Renwick, was told last May that she had only weeks to live but is now in remission after an expensive private treatment of pembrolizumab (Keytruda is the commercial name).

"If I hadn't got these drugs, I would have died in three weeks - that's how fast it is. I think that's why this is the big dirty secret, because up until now people haven't had the chance to stand up, because they are dying.

"Now we can be seen, and now we can help the others - the others who can't get access to the drugs."

Leisa and Wayne Renwick with Labour health spokesperson Annette King and the 11,000 strong petition. Photo / Mark Mitchell
Leisa and Wayne Renwick with Labour health spokesperson Annette King and the 11,000 strong petition. Photo / Mark Mitchell

The Government has come under intense pressure over a lack of funding for Keytruda and similar drugs, with Labour pledging to direct Pharmac to fund Keytruda.

Dr Coleman originally said he would not be meeting the group but since changed his mind, although not his position that decisions on drugs must remain Pharmac's and not politicians.

This afternoon, he repeated his position that what drugs to fund was a decision for Pharmac, not the Government. However, more money for Pharmac was highly likely as part of May's Budget.

"I believe a funded treatment is on the way...I totally understand your sentiment that there isn't a moment to waste...the Government has heard your message. John Key has been following this issue very closely, and he knows all the ins and outs of it.

"I get totally get your message that you need action, not more discussion, and we are working towards that."

Bob Hill, 73, of Masterton, who received Keytruda at no charge on a clinical trial for nine months and who has had no sign of melanoma tumours since September 2014, said two of his close friends had since died from the cancer.

That demonstrated the urgency, said Mr Hill, the national vice president of the RSA.

"They haven't had an opportunity to be able to take this drug. So if you say May, how many are going to die between now and May? To me, it's a no-brainer.

"I understand that there will never be a magic wand that will cure everything, and one drug will not necessarily be the answer for everybody. But for the majority, I believe it's the answer."

Mr Hill said that it was only by the efforts of his GP that he was alive today.

"I had it in both lungs, in my liver, and a big tumour about the size of an apple on my left chest wall.

"My surgeon had sent me home, told me to go home and get my affairs in order. I told my GP...and he was the one who turned around and said he had heard about some drug trials and he would try and get me on them. And I was the last one to get on the clinical trial."

He now has a new lease of life, and was ticking off items on his bucket list, including jumping off the Sky Tower, and in May he would run the half marathon in the Hawke's Bay.

Auckland student Jeff Paterson, whose family and friends have had to raise over $125,000 for courses of gene-targeted therapy, including drabrafenib, and who will likely need Keytruda in the future, said Dr Coleman's assurances were disappointing.

"It was good of him to come out and show his face. But the answers were still in circles - there's not a time range of when it will be funded, if it will be funded...it is still on the fence."

Labour leader Andrew Little said urgency was needed, and funding the drugs was more important than the flag referendum or future tax cuts.

"We are not a poor nation, we are a wealthy nation, we can do better for our citizens."

Annette King, Labour's health spokeswoman, said the petition showed the strength of public feeling on the issue: "I believe that it is going to have an impact on the Government. They can't resist this sort of pressure coming from ordinary people".

Pharmac's experts committees said yes to Keytruda - but only with low priority, because of "uncertainty" about its benefits and its "extremely high cost".

This means the drug, considered by some cancer specialists the greatest advance in melanoma treatment since chemotherapy was developed, is unlikely to receive state funding unless the supplier cuts the price of it or other drugs, or provides updates of clinical trial data showing greater effectiveness than the current data.

Keytruda is state funded in Australia and England.

The Government does not pay for any of the new treatments for melanoma that have become available over several years. It pays only for chemotherapy, which is widely considered of little benefit against inoperable, advanced melanoma.

- NZ Herald

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