She gets treatment funded, he doesn’t
Pamela Jones and Baden Ngan Kee were both told they’d die after being diagnosed with terminal cancer. But as Ngan Kee began planning for his funeral, Jones was given hope with a “miracle drug” that was funded by Pharmac for melanoma patients.
Ngan Kee, who started picking out his casket with his wife in April, wasn’t entitled to the same life-saving drug, Keytruda, because it’s not funded for lung cancer.
Fortunately, the Auckland fatherof-three was able self-fund the drug — but it costs him $8000 every three weeks to keep himself alive.
Eventually his money will run out, but he counts himself as one of the lucky ones.
“There are so many people out there who can’t afford to pay that and die. At the start of this year I was supporting three people with lung cancer, now two of them are dead.”
Both Jones and Ngan Kee are calling on Pharmac to fund Keytruda for lung cancer patients.
Jones — who had Keytruda funded for two years to treat her “initially terminal” melanoma cancer — said she couldn’t understand why she had the drug funded while people dying from lung cancer had to pay.
“I had a brother who died from lung cancer at age 46 after trying every medicine available.
“On behalf of my brother and all the lung cancer patients out there, they should have the same opportunity as I did and know that there is light at the end of the tunnel.”
Drug company Merck Sharp and Dohme (MSD) applied for funding in February last year for the immunotherapy drug to be used as an initial treatment for people with advanced non-small cell lung cancer and a
high level of the protein PD-L1.
Three months later Pharmac’s pharmacology and therapeutics advisory committee deferred the decision on whether to fund the drug for lung cancer.
Then in November it was considered again when MSD provided further information.
Today, nearly two years on, funding Keytruda remains under assessment and there’s no clear time frame on when a decision will be made.
Pharmac has defended the delay, saying it is on a fixed budget and is assessing numerous different medications for lung cancer treatment.
“Cancer medicines are developing at a quick rate. These are often targeted for smaller patient populations and can be very expensive,” Pharmac director of operations Lisa Williams said.
She said Pharmac had to ensure it funded the best medicines within the New Zealand context.
“This means that we are considering a number of immunotherapy treatments for lung cancer and are continually reviewing developing evidence.”
But Lung Foundation chief executive Philip Hope said the delay was unacceptable because lung cancer patients are dying every day.
“If Pharmac made the call to fund Keytruda it could prolong, and in some cases save, the lives of around 1500 Kiwis every year.”
Hope said the inequalities of health were extremely disappointing.
The Lung Cancer Foundation had contact with many patients that have to mortgage their home or start Givealittle pages to pay for Keytruda.
“And then we have patients sent home to die because they can’t afford to pay,” Hope said.
Lung cancer is the biggest cause of cancer death in New Zealand — largely because it is often detected late, when the disease is very advanced and has spread to other parts of the body.
Pre-election, Labour promised to make world-class cancer treatments available to all New Zealanders but Health Minister David Clark now says it is not up to the Government to second-guess the experts of Pharmac about which drugs it purchases.
“This Government respects the independence and impartiality of Pharmac,” Clark said.
The minister said the desire for the latest cancer treatments by New Zealanders suffering from the disease was understandable. “However there does need to be good evidence to support the case for funding them.”
Williams said Pharmac was unable to provide a definitive time frame for if, or when, a funding decision would be made.
“This is because the relative priority of funding one medicine compared with other medicines can change over time.”