Woman’s battle for treatment
Julia McNicol has a rare and aggressive skin cancer but can’t access public funding for the treatment drug Keytruda because the disease has not spread far enough through her body yet.
The 60-year-old Napier woman has stage 3C acral melanoma.
Problems emerged after an accidental slicing of her finger in December, which refused to heal.
After several medical consultations, McNicol underwent a partial amputation of her finger in April. A biopsy confirmed it was acral melanoma, which – unlike other forms of melanoma – is not related to sun exposure.
Specialists recommended the drug Keytruda, which is fullyfunded by Pharmac for people with advanced stage 3-4 melanoma – when the disease has spread and cannot be removed by surgery.
Unfortunately, McNicol is not eligible as it has not travelled ‘‘to a lung, or elsewhere, yet’’.
She decided she would pursue treatment anyway but this is costly – 17 infusions at $790 each, to be administered every three weeks, in addition to the $69,000 cost for the drug itself.
The total of about $82,400 does not factor in travel costs – McNicol has to travel almost three hours to Palmerston North for infusions.
‘‘You work all your life, you raise four children and you don’t expect to be stung with an $85,000 bill for your health. I’ve paid taxes since I was 16 or something. So it was a bit of a bummer but I thought you do what you have to do.’’
McNicol turned to crowdfunding to help raise money for treatment. It was time to ‘‘revisit the situation’’ with regard to accessing Keytruda through the health system, and not relying on private funding, she said.
The Cancer Society’s medical director, Dr Chris Jackson, said treatments for advanced cancer were improving at a rate ‘‘never before seen’’, so could improve
the lives of thousands if access was expanded.
‘‘Changes need to be made to the Pharmac system so that drugs that improve quality or quantity of life for people with incurable conditions ... can be reviewed much more rapidly.’’
Pharmac delivered medicines at ‘‘much lower prices’’ than many other countries.
‘‘The downside is that Pharmac is slower to fund novel medicines and delivers poorer access to groundbreaking medicines, such as immune therapies like Keytruda.’’
When it came to accessing new cancer drugs, the gap between those who could and couldn’t pay was ‘‘getting even bigger’’, as the gap between access in New Zealand and abroad was also increasing. ‘‘Without a change to the system ... many New Zealanders will continue to miss out.’’
Melanoma New Zealand chief executive Jude Woolston said it was not appropriate to comment on individual cases.
‘‘Checkpoint inhibitors such as [Keytruda] ... are fully funded for those who meet the special authority criteria, and those criteria are based upon the clinical trial evidence we have for treatment,’’ Woolston said.
‘‘The criteria for funding may change in future when results from more recent clinical trials are available.’’ Pharmac director of operations Lisa Williams said Keytruda had been funded for people with advanced stage 3-4 melanoma – ‘‘metastatic or
‘‘You work all your life, you raise four children and you don’t expect to be stung with an $85,000 bill for your health.’’ Julia McNicol
unresectable’’ – since September 2016. ‘‘The clinical criteria for funding align with what was sought by the supplier and with evidence provided.
‘‘We have had a number of applications for wider funded access to [Keytruda]. Our assessment process is to first review evidence of effectiveness and then to determine what priority additional funding would have compared to other medicine investment choices Pharmac has.’’
A spokesperson for Health Minister David Clark said it was not appropriate for Clark to comment on the funding of individual drugs.
Julia said she was lucky, as she had time to prepare for death. ‘‘[I can] tell the kids, I might have one, two, three years but they can semi-prepare to a degree, it’s not like I’m going to go out there and boom, get smashed by a car – that’s tragic and would be hard to live with.’’