Two terminal cancer patients: She gets treatment funded, he doesn’t

Baden Ngan Kee (left) is not being funded for his lung cancer treatment, but Pamela Jones (right) is being funded for her melanoma treatment. Photos / Dean Purcell, Jason Oxenham
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Baden Ngan Kee (left) is not being funded for his lung cancer treatment, but Pamela Jones (right) is being funded for her melanoma treatment. Photos / Dean Purcell, Jason Oxenham

NEW ZEALAND

Two terminal cancer patients: She gets treatment funded, he doesn't

Baden Ngan Kee (left) is not being funded for his lung cancer treatment, but Pamela Jones (right) is being funded for her melanoma treatment. Photos / Dean Purcell, Jason OxenhamBaden Ngan Kee (left) is not being funded for his lung cancer treatment, but Pamela Jones (right) is being funded for her melanoma treatment. Photos / Dean Purcell, Jason Oxenham
Baden Ngan Kee (left) is not being funded for his lung cancer treatment, but Pamela Jones (right) is being funded for her melanoma treatment. Photos / Dean Purcell, Jason Oxenham
Pamela Jones and Baden Ngan Kee were both told they were going to 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 as it's not funded for lung cancer.

Fortunately, the Auckland father-of-three was able self-fund the drug - but it comes at a cost of $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.

Melanoma cancer patient Pamela Jones says Keytruda saved her life. She's speaking up for her brother who died of lung cancer and didn't have the same opportunity. Photo / Jason Oxenham

"On behalf of my brother and all the lung cancer patients out there, they should have the same opportunity has I did and know that there is light at the end of the tunnel."

Drug company Merck Sharp and Dohme (MSD) lodged an application for funding in February 2017 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, and funding Keytruda remains under assessment and there's no clear timeframe 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 that 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 as 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."

He said the inequalities of health were extremely disappointing as 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.

Pre-election, Labour promised to make world-class cancer treatments available to all New Zealanders but Minister David Clark now says it is not up to Government to second-guess the experts of Pharmac about which drugs it purchases.

"This Government respects the independence and impartiality of Pharmac," Clark said.

Clark 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 timeframe 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."

How getting drugs funded works:

• An application is made and Pharmac's and the Pharmacology and Therapeutics Advisory Committee (PTAC) assess the evidence.

• Four factors including health need, health benefit, cost and savings, and suitability are considered.

• Three levels of impact are also reviewed including the person, the person's family, the whanau and the wider society, and the broader health system.

• There is no set timeframe on how long this process can take.

• Detail such as the relative health benefits, the amount of funding available, the success of negotiations with the suppliers and/or new clinical data, and the mix of other funding applications being considered at any one time, are all examples of factors that may change the relative priorities of funding choices.

About lung cancer in New Zealand:

• Over 1800 Kiwis die from lung cancer every year, and more than 2000 are diagnosed.

• One in five people diagnosed with lung cancer have never smoked.

• Māori women are four times for likely to get lung cancer than non-Māori women.

• Māori men are three times for likely to get lung cancer than non-Māori men.

• 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.


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