Dying patients with rare chemotherapy reaction paying for own drugs

Dying patients who suffer a rare reaction to chemotherapy are having to pay for their own drugs because their cases are not considered exceptional.

A 50-year-old Auckland woman, Patricia Tear, a sole caregiver to children aged 9 and 11, was diagnosed with bowel cancer last year.

She had surgery followed by chemo but suffered from cardio-toxicity from the chemo drug, known as 5-FU.

It recurred in a second attempt and doctors decided it was too risky to repeat.

Instead they applied to drug-buyer Pharmac for access under an exceptional circumstances scheme to an alternative, unfunded drug - raltitrexed, brand name Tomudex.

That was declined as Ms Tear was not considered truly exceptional. Instead, Pharmac said Ms Tear would be part of a wider group who, when exposed to the 5-FU drugs, would develop heart pain or toxicity. It added they should be considered for funding under the regular method, listing on the Pharmaceutical Schedule, but that's not currently available.

It's left Ms Tear feeling abandoned by the health system. "Up the creek without a paddle as far as I'm concerned. I'm one of the ones that have just been sent home, forgotten about."

She lives at home with her children while under hospice care, and doesn't know how long she'll have left: "I don't know, two years maybe, at the most."

Wellington woman Janet McMenamin, who's a fit 71-year-old, was also diagnosed unexpectedly with bowel cancer three months ago. It was aggressive and has spread to her liver. She also applied unsuccessfully to Pharmac's Named Patient Pharmaceutical Assessment, or NPPA, exceptional circumstances scheme. Similarly to Ms Tear, Ms McMenamin suffered cardiac chest pain, similar to a heart attack, when she went on two different kinds of chemo.

She said the condition is rare at one patient in a thousand, but even so she was refused funded Tomudex. She and her partner Bob Cijffers are paying $4000 a month to get it privately from Bowen Icon Cancer Centre every three weeks, to buy time for Ms McMenamin. About half of that amount was for the drug itself and the remainder for costs associated with having it administered in a private hospital, because of the lack of public funding for the drug.

"It's not a cure," Ms McMenamin said. "It's to make me as comfortable as they can and to extend my life as long as they can."

The couple say say it is discriminatory and unfair that patients like them can afford the drug privately, but that others, like Ms Tear, cannot.

"Pharmac is saying it's no longer an unusual circumstance and therefore they will be applying to put it on the official list of medicines that will be funded," Mr Cijffers said. "This process unfortunately will take at least two years and will not be of any use to Janet or Patricia or anybody else who's in the same position."

Cancer Society medical director Chris Jackson said it was leaving patients in this category "in the lurch".

"We don't know how long that will take. For many cancer drugs that is years, and unfortunately people do not have years to wait when they have cancer because people will literally be dead by the time the process is complete. And people are dying while they are waiting for Pharmac to go through these slow machinations and bureaucratic considerations."

Pharmac records show eight patients received funding under the NPPA exceptional circumstances scheme between 1 March 2012 and 31 August 2017.

Pharmac would not comment on Ms Tear's case but said it had received an application for raltitrexed to be funded for bowel cancer patients who are intolerant or unable to take the fluoropyrimidine treatment because of cardiac toxicity.

"We're not able to provide a timeframe for when the application for raltitrexed will be progressed for funding but further details will be posted on our Application Tracker as this application progresses."

Health Minister David Clark said he felt for Patricia Tear and her family. "However, as Health Minister it is not appropriate for me to intervene in individual cases. We can't have politicians second-guessing clinicians."

He said he was advised that the Auckland District Health Board, which had been overseeing Ms Tear's care, was doing its best to treat and support her.

By Karen Brown

rnz.co.nz

Cancer patient Patricia Tear with son Riley, 9,and Ruby, 11. (Photo: Karen Brown) Source: rnz.co.nz



Most watched: Meet the Iraqi immigrant family learning Te Reo Maori - 'We have a responsibility to speak the language'

This story was first published on Thursday September 13.

Mariam Arif and her whānau are immersing themselves in te reo, as a way to feel more at home. Source: Seven Sharp

This last year has seen the number of people wanting to learn the Māori language skyrocket.

From the cape to the bluff - people are queueing up to get into Te Reo Māori classes.

One of those is an Iraqi immigrant and her whānau - who have immersed themselves in the Māori language.

"We are living on this land so we have a responsibility to speak the language of this land," Mariam Arif told Seven Sharp.

She's been living here for 20 years but has only been learning Te Reo Māori for two of those.

"When I started, I didn't really like talking, but I didn't give up and stop, didn't get shy and didn't get lazy and now I'm a lot better."

Ms Arif can speak three languages, English, Arabic and Te Reo Māori.

With her family also getting in on the act, she has plenty of people to help practice her newest language.


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Auckland Girl Guides and Brownies 'shocked' to learn women had to fight for the vote 125 years ago

A group of Auckland Girl Guides and Brownies are learning about the biggest women's rights fight in New Zealand history, days out from the 125th anniversary of Kiwi women winning the right to vote.

There's a big celebration next week. It was September 19 1893 that New Zealand became the first self-governing country in the world in which all women had the right to vote in parliamentary elections.

Te Atatu Girl Guide Leah Kim, 10, told Seven Sharp it really upset her to learn that women didn't get to vote until the law was changed 125 years ago.

"I didn't understand why men just got to vote and not women," she said.

Girl Guide Leader Nicola Igusa said when the girls realised that women didn't have the same rights "they feel really shocked and surprised and say 'why? why not?. That's really unfair'. Small children are really focused on fairness, so they really get it".

Kate Sheppard had tried and failed to change the law with petitions in both 1891 and 1892, but she refused to give up.

She organised 'the monster petition' of 31,872 signatures - 25 per cent of all adult women, whose collective voices created a mammoth paper protest, 274 metres long.

A new Electoral Act was passed  and in the General Election that followed a whopping 85 per cent of New Zealand women registered to vote, did so.

Next week will be 125 years since New Zealand women won the right to vote. Source: Seven Sharp


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TODAY'S
FEATURED STORIES

Could the humble raffle draw be the solution to New Zealand's housing crisis?

A homeowner in the UK struggling to sell their property has come up with a novel way to get shift of it that could also take off in New Zealand.

The owner of a 1760 Georgian heritage-listed property is raffling off their multi-million-dollar home with tickets costing $25 a pop.

Seven Sharp looks at whether raffling houses could be the solution to New Zealand's housing crisis in the video above.

In the UK, a 1760 Georgian heritage-listed property is being raffled – could it happen here? Source: Seven Sharp


Powerball struck for fourth time in a month as winner scoops $7.2 million

Powerball was struck for the fourth time in a month tonight when a punter from Silverdale north of Auckland scooped $7.2 million.

The prize is made up of $7 million from Powerball First Division and $200,000 from Lotto First Division.

The winning ticket was sold at Pak'nSave Silverdale in Silverdale. 

It's the fourth time in as many weeks that Powerball First Division has been struck, following on from late-August’s $5 million Powerball win by a Christchurch couple. Those lucky winners plan to use their winnings to go on the trip of a lifetime to Italy. 

Four other Lotto players will also be celebrating tonight after each winning $200,000 with Lotto First Division. 

The winning Lotto tickets were sold at Kelson General Store in Lower Hutt, Richmond Night N Day in Nelson, Ilam New World in Christchurch and New World Gore.  

Meanwhile, Strike Four was won by two players in Waikato and Tauranga, who each take home $50,000. Both those winning Strike tickets were sold on MyLotto.

Lotto Powerball (file picture).
Lotto Powerball (file picture). Source: Lotto


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