As the new health minister is tasked with commissioning an independent review of Pharmac’s drug-purchasing model, there are promising signs of agreement.
Dressed in a long, slim-fitting blush dress, Georgina Russell will take the arm of her 19-year-old-son Cameron as he walks her up the aisle.
Russell will fit the dress easily; she has lost a few kilos. She and her partner Kevin brought forward their wedding, in Rotorua, after she was diagnosed three weeks ago with stage 4 melanoma.
Her body’s riddled with it; doctors failed for six months to recognise the lumps on her torso and upper arm as possible cancer. Last week, they found it had spread to her brain.
Oncologists have now put the 49-year-old on a course of publicly-funded Keytruda. And on the Monday after the wedding, she will get a first hit of Ipilimumab. That’s not funded. It will cost $20,000, money from the pockets of friends and family, money raised on Givealittle, money raised by her daughter Ashleigh and friends selling raffle tickets.
This is not a sob story. Russell would like more funding for Pharmac and the health system; of course she would. (“They put more than $100 million into horse-racing, huge money, yet people are being declined CT scans.”) But there are no tears, no recriminations, no pleas for quarter-billion dollar ringfenced funds for new cancer and rare disease drugs.
She is realistic: “I know there are a lot of other illnesses too where people suffer badly because they can’t afford medication. I don’t think it’s just cancer.”
Ipilimumab, sold under the rather Dr Seuss-ian brand name “Yervoy”, is made by drug company Bristol Myers Squibb. This is the same company that makes another melanoma drug, Opdivo; the same company that came to the table with drug-funding agency Pharmac and quietly agreed to lower its prices, while competitor Merck (the manufacturer of Keytruda) sat and watched desperately ill cancer sufferers march on Parliament in the chill autumn.
The point is: Bristol Myers Squibb is a company with a decent track record of agreeing to compromise on its pricing, while other companies let sick and vulnerable people do their lobbying work and quietly bank the profits.
This is one of the questions at the heart of the drug-funding debate: as well as asking for more public funding for Pharmac, should we also be asking big pharmaceuticals companies to reach further into their deep pockets? After all, Merck has told the markets it expects to earn US$12.55 billion (NZ$19 billion) this year – about the same as New Zealand’s entire foreign reserves.
This will be addressed by an independent review into the competitive tendering regime run by government drug-buying agency Pharmac. Jacinda Ardern announced that a Labour government would support a review, under pressure from opposition parties on the election campaign trail.
This afternoon Ardern is set to confirm she has formed a new government. Next week she is expected to announce the new ministerial portfolios – including who will be health minister. Until then, existing minister Chris Hipkins is loath to jump the gun and announce details of the Pharmac review.
But after years of often bitter sledging between Pharmac’s supporters and the lobbyists for Big Pharma, there are promising signs of compromise for whoever chairs the inquiry.
Perhaps most important is what has been removed from the table: the problematic demands for ringfenced funding for drugs for cancer and chronic diseases.
“We know that the budget for health is not unlimited, but we also have to look at the significant economic and societal costs of failing to properly integrate medicines access and funding into the health system.”
– Dr Graeme Jarvis
National had promised a dedicated cancer drug fund worth $50m a year, but the party was comprehensively defeated at the election. And advocacy group Patient Voice Aotearoa has also pulled back from its call for ringfenced cancer drug funding, over the past six months. Chairman Malcolm Mulholland, who was spurred to action when his wife Wiki was diagnosed with cancer, says the focus is now on increasing the overall budget.
That’s important, because Pharmac argues ringfenced funds favour some less effective drugs ahead of those that are gravely needed, and constrain the agency’s ability to play hardball with multinational drug companies.
Dr Graeme Jarvis, the chief executive of industry group Medicines New Zealand, represents those drug companies. He welcomes the Pharmac review as “part of both good governance and transparency”.
He wants the review to call international experts in health technology and innovation, rather than just take a domestically-focused approach. “We know that the budget for health is not unlimited, but we also have to look at the significant economic and societal costs of failing to properly integrate medicines access and funding into the health system.”
Bringing the drug companies out from the shadows
Three months ago, 34-year-old Jessica Port was approved for a so-called compassionate supply of the unfunded drug Ustekinumab. She was the last one.
After a 13 year battle with Crohn’s Disease in which she has had more than 30 surgeries and faces losing her bowel, she and her doctor say the early signs are promising that her body is responding well to the drug.
“The last 13 years of my life have been nothing,” she says. “I’ve lost that part of my life because I’ve been so sick. I haven’t been able to work, I haven’t been able to start a family, I haven’t been able to do anything, really.
“I’m only just starting to see improvements, but so far it’s showing on the MRI scan that I had on Monday, that are all the fistula are improving, and the peri-anal disease is better than it has been for years.”
She’s not shy to describe graphic details. Years of invasive surgery have put paid to any diffidence. “In the beginning I was a lot more embarrassed and quiet about it, because of the part of the body that it is, but now it’s just too important to not speak about, and there’s too many people like me who are suffering.
“If Janssen continues to plug the gap in funding there’s no motivation for healthcare funders to provide a sustainable solution.”
– Janssen Biotech
Ustekinumab, which is branded Stelara by its manufacturer Janssen Biotech, is an effective biologic option for dozens of New Zealanders who suffer from Crohn’s Disease. It is on Pharmac’s “waiting list” for funding for patients for whom existing TNF inhibitors have failed, but is rated only a medium priority by the Pharmacology and Therapeutics Advisory Committee.
“I actually feel a little bit of guilt that I get the drug on compassionate use, and all these other people in New Zealand can’t.”
In apparent frustration, Janssen wrote confidentially to gastroenterologists in July, advising it would not admit anyone else to its compassionate supply programme. “In the last month there’s been a significant increase in compassionate access requests to Janssen for Stelara,” the company wrote, in an email obtained by Newsroom.
“While continued ad hoc approval of these applications meets the immediate needs of individual patients, it puts at risk the chances of all New Zealanders achieving long-term funded access to a biological treatment that has an alternative method of action to the anti-TNFs. If Janssen continues to plug the gap in funding there’s no motivation for healthcare funders to provide a sustainable solution.”
Critics of the drug companies say this is an old tactic: giving a few selected patients free supply of an expensive drug, in order to enlist their support and that of their doctors, in lobbying for the drug to be publicly-funded. And then pulling the supply.
Certainly, patient support group Crohn’s and Colitis NZ was spurred into action: in August, it launched a petition for the drug to be publicly funded for those with severe Crohn’s disease and ulcerative colitis.
The charitable trust’s chairman Dr Richard Stein (who is also the specialist who applied successfully for his patient Jessica Port to receive a compassionate supply of Stelara) says Janssen did not ask for the petition, but company representatives were pleased with the initiative.
“I can confirm that the provision of free stock programmes to patients plays no influence on our decision to fund a medicine.”
– Sarah Fitt
Janssen also sponsors Crohn’s and Colitis NZ to the tune of about $20,000 a year, money that the trust spends on its children’s camp. The drug company is disclosed as a supporter on the trust’s website, and Stein says the money comes with no strings attached. And it’s not very much – certainly not enough to buy off the trust.
And he’s right, it’s not much. Because here’s another revenue statistic: Janssen’s parent company Johnson & Johnson, which makes everything from Band-aids to hip replacements to trial Covid-19 vaccines, forecasts earnings of more than US$82 billion (NZ$124b) this year.
Pharmac chief executive Sarah Fitt is diplomatic about the compassionate access programmes. “I don’t have any information on funding from Janssen, but I can confirm that the provision of free stock programmes to patients plays no influence on our decision to fund a medicine,” she says. “Companies may choose to provide free access via these programmes but that is their commercial decision.”
On the other side, a Janssen spokesperson said the company believed the Pharmac medicines funding model, “whilst not broken, is no longer fit for purpose”.
“As a result New Zealanders are missing out on publicly funded treatments that are available as standard of care overseas in countries with comparable health systems and economic status. Any enquiry into Pharmac could address this and other issues raised by stakeholders.”
Janssen works with a number of New Zealand patient organisations like Crohn’s and Colitis NZ, to enhance the quality use of medicines, the spokesperson adds. “We respect the independence of these organisations and work with them in an open and transparent manner.”
The company has been supporting Camp Purple for children and teens with Inflammatory Bowel Disease since its inception more than six years ago: “The company’s involvement with Camp Purple predates any Pharmac application in relation to Stelara.”
Janssen does have form for somewhat cynical marketing tactics. In 2014, the company’s New Zealand PR representative lobbied for funding for its $60,000-a-year prostate cancer drug Zytiga by claiming breast cancer sufferers get “gold standard” treatment while men with prostate cancer are “sent home to die”.
“While it’s nice for drug companies to give compassionate access, it does actually fall on the taxpayer and the government to fund these drugs appropriately to all New Zealanders get a fair go.”
– Professor Richard Gearry
But what is equally clear is that the doctors lobbying for Stelara to be funded are passionately committed to their patients’ wellbeing, and have done their homework on the rationale for funding.
Otago University’s Professor Richard Gearry, a world-renowned expert on Crohn’s disease and ulcerative colitis, puts responsibility squarely at Pharmac’s door. He says their funding calculations measure the health costs and benefits, but fail to factor in the social costs of when young people like Jessica Port are not able to contribute productively to the community.
“There are a number of people around the country who have got no other options; they’ve burnt through everything, they’re in and out of hospital, they’re costing themselves and their families a lot financially, emotionally.
“I’ve just come from my own inflammatory bowel disease clinic this afternoon, and there were probably three patients there who have burnt through the existing drugs, one of whom will be facing surgery in the coming weeks.”
He’s not asking for targeted funding for these drugs. He says government needs to increase the sizer of Pharmac’s drug-buying budget.
“While it’s nice for drug companies to give compassionate access, it does actually fall on the taxpayer and the government to fund these drugs appropriately to all New Zealanders get a fair go.”
Consistent treatment for those who face stigma
Professor Gearry would argue persuasively that those with Crohn’s and other inflammatory bowel diseases face discrimination, because they’re too embarrassed to speak out about their suffering.
This is even more true of diseases like HIV, lung cancer and Hepatitis C. Those afflicted with them face stigma; it’s as if they are somehow complicit in their own misery, through making bad decisions like unsafe sex, smoking or sharing needles.
That’s why the Lung Foundation is also so anxious to remind people that one in five people diagnosed with lung cancer have never smoked; it’s as if they are more empathetic victims.
One of the consistent criticisms of Pharmac is that it fails to fund drugs that are taxpayer-funded in countries like the UK, Canada or Australia, or that its simply slow to fund them.
Pharmac’s Sarah Fitt disputes this: for every drug that New Zealand is slowed to fund, there are others where Pharmac is a world-leader. “I used to work as a pharmacist at the hospital in Auckland and we had a number of paediatric medicines available in New Zealand than weren’t available in Australia.”
More recently, she points to PReP (pre-exposure prophylaxis), a preventive medicine taken by people at risk of HIV. “We were the first country in the world to publicly fund that.”
Or there’s Dabigratan, an anti-coagulant – New Zealand was among the first there too.
But the drug she takes most pride in is Maviret. That’s because she has worked closely with Hepatitis C patients in the UK and New Zealand; she first came to New Zealand to work with the renowned Professor Ed Gane at Auckland’s liver transplant unit.
“Maviret is a treatment that is a 99 per cent cure for Hepatitis C in eight weeks’ treatment, which is unheard of. A lot of the phase 1 studies were done in New Zealand,” she says.
“Even though it’s expensive and there are a large number of patients, who could benefit because it’s a cure, the savings to the health system are significant. Because patients avoid needing liver transplants or getting liver failure or liver cancer.”
Maviret previously cost more than $1000 per pill, and patients needed to take one a day for eight weeks – a $73,000 course.
“So that’s a good example where we do fund expensive medicines because they are cost effective for the health sector – let alone the huge benefit to the individual patient and their family.”
And despite the stigma attached to Hepatitis C, there is one prominent Kiwi who has stood up to speak about it. Martin Phillipps, the frontman of the Dunedin pop band The Chills, has even made a movie about the more than 15 years he lived with Hep C, and how his life was changed when Pharmac funded a cure.
“I grew up knowing the word ‘hepatitis’ as something that was dirty and only confined to certain social groups,” he says. “What surprises me is I really thought the stigma of these types of diseases or conditions was disappearing – but it’s still there pretty strongly.”
On the road touring as a musician through the 1990s, Phillipps suffered depression. He started using alcohol and injecting a sort of home-cooked morphine sulfate. (Heroin wasn’t available in New Zealand).
Phillipps contracted the virus after he and a friend had been getting high in about 2002. The friend left one of their used syringes in a paper bag that Phillipps picked up. The needle pricked him and spread the virus, he said.
“There is a lot of politics when you start talking about Pharmac – it’s difficult. But funding this drug was one of the best decisions they’ve made, I think, on a humanitarian level. And it puts the word out that people with this particular disease are also worth saving. It was quite a strong statement.”
– Martin Phillipps
For years, he was weak, listless, tired, debilitated. Unable to hold down work or a tenancy, he relied on caring friends helping him out, and moving him and his big collection of vinyl and thousands of books from one flat to another, time after time. He was given one drug after another; none worked.
“Then miraculously, the very drug I need suddenly becomes available through a funding process – which at that point was not quite official. And it saved me!”
Phillipps is a musician; he could never have found $73,000 to pay for the drug himself. And he thought he had wasted his chances – so he still expresses surprise and delight to be cured.
Yes, his liver is badly wasted away and will never recover. His health isn’t great, but it’s no longer spiralling downhill. He is cured – and that is something that very few of Pharmac’s funding beneficiaries can ever say.
None of the cancer drugs cure cancer; none of the inflammatory bowel disease drugs cure inflammatory disease, though they can improve and prolong the life of sufferers. Maviret, though, is a cure for Hep C – and that has to be worth something, despite the critics who argued cancer and rare disease drugs should be the priority.
Phillipps says it’s important to talk about the human triumphs of our drug funding model, not just the failings.
“There is a lot of politics when you start talking about Pharmac – it’s difficult. But funding this drug was one of the best decisions they’ve made, I think, on a humanitarian level.
“And it puts the word out that people with this particular disease are also worth saving. It was quite a strong statement.”
Now, he has his own house near Saint Clair, and is paying a mortgage. And this week, he and The Chills finished their new album with a private playback party.
They have named the new album Scatterbrain. “People are actually raving about it,” he says proudly. “They think it’s the best think we’ve done since Submarine Bells.”
Lockdown levels permitting, the band hopes to perform a handful of festivals around Christmas, before touring the new album in April. “That was the weird thing, as soon as the virus went, my voice got better, I wasn’t sweating on stage any more.
“I’m in better form than ever.”
