Melanoma patients and their advocates were understandably dismayed when New Zealand's drug buying agency Pharmac announced in December it deemed funding Keytruda a "low priority."
The agency said it acknowledged the high incidence of melanoma and current lack of effective funded treatments for advanced melanoma in New Zealand, but had reservations about the "magnitude and long-term durability" of any benefits, "together with the extremely high cost of Keytruda." It stated it would work with the "pharmaceutical company to see if the issues can be resolved through further data provision or through commercial means." For more on Pharmac's decision it's worth reading the summary of advice to Pharmac on Keytruda.
In December the Herald's Martin Johnston published an in-depth look at how Pharmac makes its decisions - see his reports, The drugs of choice and Pharmac's focus: getting best value.
RNZ's Karen Brown has a short backgrounder on the drug - see: What's Keytruda and why won't Pharmac fund it? and Michael Daly has a good overview of the debate in If Keytruda keeps melanoma patients alive, why isn't it available free in NZ?.
The views of melanoma patients
"How can you put money before people?" asks Jeff Paterson who was diagnosed with stage four melanoma and whose next phase of treatment will likely depend upon Keytruda - see Audrey Young's Student's cancer battle: Melanoma drugs not funded by Pharmac.
Paterson, along with Leisa Renwick - whose own cancer is in remission thanks to Keytruda - and other melanoma patients and supporters presented a petition at Parliament on Tuesday calling on the Government to fund the drug.
Thwarted by what many believe is a lack of accountability on the part of Pharmac, petition organiser Renwick said the only option was a public campaign: "There's nothing else we can do but stand on the steps of parliament and ask the government to hear us. There are no other avenues of appeal." You can listen to Leisa Renwick and the follow-up interview with Health Minister Jonathan Coleman on Tuesday's Morning Report: Will the Health Minister front up to melanoma sufferers?.
For more on Renwick's own cancer and her drive to fight "separate health systems for those who can afford treatments and those who can't", see Martin Johnston's Cancer - the cost of a life: Patient says system sends have-nots home to die.
Coleman initially declined to meet with petitioners - a decision that an appalled Duncan Garner labelled "uncaring. Not to mention bloody hypocritical" - see: Govt hypocritical to not talk with cancer patients. Garner complains, "His time is precious, apparently. Well so is theirs - many of them are dying, Minister, and they desperately need help, hope and the ear of someone in charge. That's you, Sir."
Garner makes no bones about his position on the debate: "This Keytruda melanoma drug is saving lives and you know within a short space of time if it works. Trials need to start immediately. The road blocks and public service speak looks like petty politics. On this issue the Government has lost its touch."
A lack of fairness and consistency
In another heartfelt piece, Duncan Garner says "this really is about the rich and the poor and it shouldn't be. Access to medicines in this country should be access for all". He "calls out" the Prime Minister for being happy to override Pharmac when it suits him, such as National's 2008 opposition campaign to fund a longer course of breast cancer drug Herceptin against Pharmac's advice. Garner says it's not good enough to now tell melanoma patients "oh we can't get involved in Pharmac decisions" and labels the Government's stance on Keytruda 'rubbish'.
If it ends in a public relations disaster then, according to Audrey Young, National only has itself to blame. Like Garner, Young says National is now paying the price for its actions over Herceptin, as the party appears "hollow, hypocritical and heartless" for its unwillingness to do the same for melanoma patients. In Govt's hands-off stance is fine - if people aren't dying she says when it comes to Keytruda the arms-length decision-making process is "not working" and "not fair" and politicians should intervene.
Amidst emotional scenes outside Parliament, Renwick told those gathered it absolutely comes down to money: "Only those with the means to pay can access medicines that can save our lives. The wealthy are offered treatment and the poor are sent home to die - and that's a fact" - see Nicholas Jones' Life-saving melanoma drug: 'People are dying' Health Minister Jonathan Coleman told.
Back in December Jane Phare reported Rich-lister turns to unfunded Keytruda. Former beer baron Douglas Myers, now "under the care of a private London oncology clinic", was reported to be spending "tens of thousands of dollars every month on chemotherapy drugs, including the new wonder drug Keytruda, to help keep him alive for a little longer."
For most patients with advanced melanoma, though, it's a tale of Givealittle pages, sausage sizzles, galas, cake stalls and raffles. And that's the 'lucky' ones who have support and can fundraise, or are able to remortgage houses and cash in superannuation funds. Jeff Paterson and his family remind us that fighting cancer is harrowing enough without the terrible stress of continual fundraising.
Paterson's plight is shared by dozens of New Zealanders - for just a few examples, see Deidre Mussen and Rachel Thomas' Desperate melanoma patients forced to fundraise for life-extending treatment, and Karen Brown's Struggling to Stay Alive with Melanoma.
The views of cancer lobby groups
The call to urgently fund Keytruda has the support of some of New Zealand's leading cancer specialists. Probably the most outspoken critic of Pharmac's decision on the melanoma drug is oncologist and medical director of the Cancer Society, Chris Jackson.
Paul Henry, who has also campaigned hard for some time against Pharmac's decision on Keytruda, recently interviewed Jackson - see: Cancer Society calling for life-saving drug. Jackson describes drugs like Keytruda as "truly transformative" and "light years" ahead of anything we have previously had available for treating patients with melanoma. Yet, he says, he has "to sit with patients every single week and say to them there are treatments that could benefit you that you can't have."
Jackson says it is accepted that chemotherapy is not an effective treatment for melanoma but, by virtue of deciding alternative drugs are not good enough, Pharmac has arrived at a position where they have "effectively made the decision that chemotherapy is an acceptable standard of care for melanoma in NZ... and it's not... It's just not credible to have that position."
He says that the claims we can't afford the drug are "not true", and it's "a political decision" not to return the savings that Pharmac hands back to the government every year to the pharmaceutical budget. While absolute costings are not clear, as we are not privy to the price that Merck Sharp and Dohme is offering to Pharmac, he points out that costings cannot be based on an assumption that every single patient with advanced melanoma is appropriate for this drug. He says the effectiveness of Keytruda is established very quickly and "you are only paying for people who benefit after a period of around 3 months."
In a must-read Herald opinion piece, Jackson elaborates on his arguments - see: Cancer sufferers in dark over drug, Jackson. He says the "answer is not politicians deciding what drugs to fund", and instead he lays out other solutions to a situation that "offends our Kiwi sense of fairness."
In the wake of the petition yesterday, Jackson posted on Facebook and on Tuesday he was interviewed on Newstalk ZB where he pointed out that, in contrast to New Zealand with "zero" available options, "Australia, England and Canada...each have "three funded, effective and readily available" melanoma drugs. He points out New Zealand invests less in cancer drugs than comparable countries and says greater funding would mean decisions more in line with those countries - Cancer Society: NZers deserve access to melanoma treatment.
Oncologist and Melanoma New Zealand board member, Rosalie Fisher, shares Jackson's views and says she in "no doubt Keytruda is a breakthrough drug" and finds it hard to understand why Pharmac would not fund it. She too disagrees "with the idea that the data isn't good enough... It's certainly been good enough for Australia and the UK" - see Alex Ashton's Cancer survivor 'shattered' at Pharmac funding call.
American cancer specialist Dr Antoni Ribas told John Campbell that he was among a group of specialists who "urged Dr Coleman to provide an effective funded treatment in November when he was here for a summit" - see: Melanoma patients deliver petition to parliament. Ribas says "I was appalled by the country with the highest incidence of melanoma being stuck with a chemotherapy drug, a four year old drug, when there's many others that have been proven to be superior."
Martin Johnson says of course "the size of the drugs budget is at the heart of the Keytruda debate" - see his useful report, Pharmac's focus: getting best value. So does New Zealand spend enough on medicine? Johnston reports that "Pharmac was created to constrain growth in spending on non-hospital medicines, which was 20 per cent in some years in the 1980s, and more recently its role has expanded into hospitals. Although New Zealand is slightly above average among the OECD club of developed countries for overall health spending as a proportion of the national income, we are ranked 29th out of 33 countries for our spending per capita on medicines."
For more on this, see Danielle Nicholson's New Zealand access to medicine worst in OECD.
The view of Labour
The Labour Party is making the most of National's new-found respect for Pharmac's independence by promising to override Pharmac and fund Keytruda if elected. Andrew Little repeated that promise this week on Morning Report, saying "in the end it's the politicians that set the rules for Pharmac." You can listen to his four minute interview with Susie Ferguson which provides a good summary of Labour's position: Health Minister needs to step up to responsibilities.
Little says while Pharmac generally does a good job, "Politicians can get our own advice and make our own considerations. Sometimes you come across a situation where you say actually in the public interest it is right that this drug should be available and Pharmac should be required to fund it."
Labour has adopted Chris Jackson's suggestion that Pharmac follow Britain's lead and establish an early-access funding scheme where, in areas of high unmet need, drugs that show early but compelling promise can at least be made temporarily available, ensuring people who are currently affected do not miss out while further data is collected.
Labour has also been critical of savings from Pharmac's budget being diverted to other parts of the health system, saying rather than papering over underfunding in other areas they should be spent on drug purchases - see: Sam Sachdeva's $40m in Pharmac savings should be moved into new drug purchases - Labour.
Finally, there are some interesting satirical responses to the debate - see my blogpost, Cartoons about funding cancer drugs in New Zealand.
Tomorrow: Part two: Cancer drugs - the case for Pharmac's independence