Battling cancer and fighting for funding

Dr Rosalie Stephens says it's crucial that PHARMAC moves more quickly when revolutionary treatments come along.
Dr Rosalie Stephens says it's crucial that PHARMAC moves more quickly when revolutionary treatments come along. Photo credit: Supplied

Dr Rosalie Stephens turns up to work these days with hope. Three years ago, the Auckland oncologist was delivering the devastating news to many advanced melanoma patients that they would be dead within a year. Today, she doesn’t have to put a time limit on their life.

"Before, we were still helping people in a desperate situation," she says. "But actually having people coming back to your clinic and having a social chit chat:  'How's the family?' and 'What travel plans have you got' - that is so nice."

It's a far cry from 2015, when PHARMAC was refusing the fund the groundbreaking medicine  Keytruda. It was only available to those lucky few who had thousands of dollars spare each month to save their lives. Rosalie, a Melanoma NZ trustee, was among doctors taking a stand.

"There was a lot of distress on both the patient and the doctor side because we knew there was something that could make them better and we couldn't get it for them," she says.

Today, she estimates up to 100 people in Auckland alone are only alive because of the drug. But she is still battling to get access to others stuck in limbo on the medicines waiting list for PHARMAC funding.

  • Cancer is the number 1 killer in New Zealand
  • 1 in 3 New Zealanders are expected to develop cancer in their lifetime.
  • 9500 New Zealanders will die as a result of cancer each year.
  • 17 cancer medicines are waiting to be funded for the first time, or their use widened

Like a group of medicines called BRAF inhibitors, which Rosalie says were "a major breakthrough" in 2010. She recently spent her weekend filling out forms in a desperate attempt to get one for a middle-aged mother with no way to pay for it. It was declined.

PHARMAC's Director of Operations, Lisa Williams, says their advisors have examined the clinical evidence. "They have recommended that we don't fund them due to the associated toxicity, uncertainty regarding magnitude and duration of benefit, and the high cost."

For Rosalie, that means difficult conversations with patients about whether they can afford to pay that high cost - up to $10,000 a month - themselves.

"You feel as if you're some gatekeeper of a certain drug depending on whether someone has personal financial security or not."

She's watched patients hold charity auctions, run sausage sizzles, and beg for public help on Givealittle. The young mother earning the minimum wage, who paid for Keytruda, sticks in her mind.

"I don't know how she got the money but she did - and sadly it didn't work because [her cancer] was too advanced by the time she'd gathered the resources to have the treatment."

Rosalie says it's crucial that PHARMAC moves more quickly when revolutionary treatments come along.

"It became clear how effective [Keytruda] was and it was still being denied even after it became funded in Australia and the UK and most other developed countries. That shouldn't have been allowed to continue for as long as it did."

The UK takes on average 143 days to fund a modern medicine after it is registered for use

  • Australia takes 370 days
  • In NZ patients wait on average 517 days for PHARMAC funding, with no time frame for decisions

PHARMAC warns that the funding systems in other countries are often not comparable.

"New Zealand must make its own decisions, carefully assessing the available evidence and thinking about medicines use in the New Zealand health context," Lisa Williams says. "Our fixed budget gives our health system certainty over the investments, and costs, of medicines."

Rosalie accepts that there is not an endless pot of money. But she hopes that in future, doctors on the front line are listened to.

"We're not going to try to trick PHARMAC into spending money on a drug that we think might have marginal benefit. We're going to save our arguments for the drugs that we think really matter.

"It can be the difference between being alive, and not."

This article was created for Medicines NZ.