The price of a life
Sick Kiwis needing unfunded medicines face a stark choice of remortgaging the house, or appealing to the generosity of strangers. Bridie Witton reports.
Life is slowly starting to become normal for Kiri Morehu after terminal melanoma killed her husband, Andrew Hercus.
Hercus was given 12 months to live in February 2019. What followed was surgeries, immunotherapy and radiation therapy. When all subsidised medicines failed to stop the cancer, the couple footed the bill for drugs Cotellic and Zelboraf. It cost more than $60,000 over six months before Hercus died last March, aged 41. The medicines are funded in dozens of countries.
Like many others in her situation, Morehu is left with a series of ‘‘what ifs’’: What if the couple hadn’t had the added stress of financing his medical bills; what if she wasn’t trying to find $10,000 a month and could have spent more time emotionally with him?
It’s a common feeling, says Patient Voice Aotearoa chair Malcolm Mulholland. ‘‘Often the guilt that the patient with advanced cancer will have: Do I die early or do I die in debt?’’ Many turn to crowdfunding platforms to raise money for treatments.
New Zealanders have the worst access to funded modern medicines out of 20 OECD nations studied in a 2019 International Comparisons of Modern Medicines report. As well as those with cancer, New Zealanders with Crohn’s disease, cystic fibrosis, and diabetes cannot get the latest drugs through Crown agency Pharmac.
Added to this, New Zealand is much slower to approve new medicines, taking an average of 17 months, compared with an OECD average of eight.
Sometimes companies behind the latest drugs have not even applied for funding. New Zealanders with cystic fibrosis are campaigning to bring Trikafta, a breakthrough medicine fast-tracked for approval in the United States, to this country. Cystic fibrosis affects the lungs and digestive system and limits life expectancy to the late 30s. Many require lung transplants, despite taking dozens of medications a day.
But Vertex, which makes Trikafta, has not yet applied for Pharmac funding. Selffunding the drug would cost a patient close to $500,000 a year. Pharmac also works within a fixed budget, so a decision to fund any new medicine comes at the expense of another, Cancer Society chief executive Lucy Elwood says. It also has to balance clinical and commercial interests in its decision to fund a new medicine.
‘‘It essentially is only funding new medicines if it is funding less of something else, or getting a discount on something else, or if the budget goes up, and the budget is not going up as fast as in other countries.’’
Still, families who are often down to one income have few options once they have exhausted state-funded treatments. ‘‘New Zealanders are remortgaging their houses and going into hardship to access these lifeprolonging medications that in other counties are funded by the state.’’
Oncologists who have worked overseas might be used to having 10 different drugs for a cancer type ‘‘and suddenly you come in here and there’s only five’’, Elwood says.
New Zealand spends less per capita on medicines than other comparable countries, but achieves better value for money, a 2010 report to the minister of health found. But it has less access to new, high-cost medicines than other countries, in particular Australia.
The model impacts the country’s fastest-growing health condition, type 2 diabetes. From this month, as many as 53,000 New Zealanders with the worst type 2 diabetes can apply for new diabetes medication, in a move applauded by clinicians.
But with as many as 250,000 people living with type 2 diabetes, it still falls below the standard of care ‘‘in every other country in the Western world’’, says Dr John Baker, chair of Diabetes Foundation Aotearoa. ‘‘Pharmac are forced into this position where they have to effectively ration supply.’’
Diabetes is a group of diseases which result in too much sugar in the blood, because the body doesn’t produce enough insulin. Type 2 diabetes, the most common type, is primarily a disease of middle-aged and older people, related to excess weight, diet and lack of exercise.
People of Ma¯ ori, Pacific and South Asian ethnicities are particularly at risk, while more children are diagnosed with the disease each
‘‘Pharmac are forced into this position where they have to effectively ration supply.’’
year. Diabetes often leads to other illnesses such as liver and heart disease. It can also lead to limb amputations, and leave people on dialysis machines.
But for those who can access the new medicine, it will manage their blood sugar levels as well as health complications such as kidney failure and heart disease.
And while Baker says Pharmac has done the best it can, the ‘‘new’’ medicines are not all that new. ‘‘The data about the life-saving benefits of these new drugs came out in 2015, so that is five years ago. They were under pressure. The last drug they funded [for diabetes] was in 2003.’’
At only 25, Hollie Asprey knows time is running out for the funded medicines she uses to treat her ulcerative colitis, an inflammatory bowel disease that causes inflammation and ulcers in the digestive tract. Her current dosage has been doubled, because her body stopped responding to the medicine.
‘‘It will be pumped into my blood for a couple of hours every six weeks. It used to be every eight weeks, but it wasn’t responding.’’
Once her body stops responding to the drugs, an invasive surgery to remove all or part of her colon is inevitable, and she will live with a colostomy bag.
More than 20,000 New Zealanders live with diseases such as Crohn’s or colitis, but if the funded drugs don’t work, or for only a limited time, there are no other options but surgery. Asprey is one of thousands pushing Pharmac to fund ustekinumab – an expensive medicine which is funded in more than 35 countries overseas.
Without the expensive treatment, doctors say patients are condemned to a life of unnecessary pain, Crohn’s and Colitis NZ chair Richard Stein says. ‘‘When people don’t respond to medication, we have nothing left except surgery. The disease also comes back.’’
Pharmac’s own committee advised it fund ustekinumab in May last year, while its chief executive Sarah Fitt has said she is in regular discussion with suppliers and hopes the medicine, which is on a waiting list, will be funded soon.
But until that happens, it is a waiting game for Asprey. She was diagnosed two years ago, and her symptoms included pain, nausea, bleeding and mucus during trips to the toilet – which could be as many as 20 times a day. She has spent weeks at a time in hospital.
Moving overseas or funding her own, better medicines are out of reach financially.
‘‘It’s also hard to come to terms with the thought of possibly being forced to move to another country to get help, which would be taking me away from my career here, my friends and my family and the life I have been trying to build up in the place I think of as home.’’
Concerns about the cost and the time it takes to bring new medicines into New Zealand are not new, and should be addressed by an independent review into Pharmac’s funding and processes.
Part of the review should address an early access to medicine scheme. A similar scheme exists in the United Kingdom, where patients with life-threatening or seriously debilitating conditions can get access to medicines that do not yet have a marketing authorisation.
But an early access scheme is not without issues, says Dr Bryan Betty, medical director of the Royal New Zealand College of General Practitioners.
Betty, who was the deputy medical director of Pharmac for seven years, says he is supportive of the Pharmac model overall, but the problems are with about 20 per cent of it.
‘‘There are problems with these high-end, very expensive oncology type drugs, or drugs for other conditions. It is a budget struggle.
‘‘The Pharmac model is a capped model. If you have $50 million to spend and you have something like a diabetes drugs which could go to 200,000 people, at $50 to $100 a month, that is really problematic to the system.
‘‘You end up in these situations where you say ‘x amount of money doesn’t get spent on diabetes, but gets spent on 200 people with x condition at a very high cost’.’’
He believes some new medicines are not deserving of the hype they receive.
‘‘To be fair to the system, a lot of the hype around certain medications is certainly not the reality of these medications. You’ve got to be really careful about that. If the evidence isn’t there, the evidence isn’t there and you can put a spin on anything.
‘‘The whole world is confronting this issue, and there ain’t easy answers. It would be very remiss to bulldoze it.’’
A Pharmac spokesperson says it frequently funds unregistered medicines for individual patients in exceptional circumstances.
In cases of rare disorders, suppliers can apply to Pharmac before they have Medsafe approval, and it has a parallel assessment process for cancer medicines.
Pharmac’s director of operations, Lisa Williams, says six new cancer medicines were funded in the last financial year. It also widened access for a myeloma and melanoma medicine, and listed a new drug for cardiac protection with chemotherapy.
‘‘Having a fixed budget means we need to make careful and considered funding choices in the interests of all New Zealanders,’’ she says.
‘‘We know funded access to effective medicines is important to everyone – it’s important to us too because we strive to get the best health outcomes for all New Zealanders from the medicines we fund in a fair and equitable way.’’
In 2015, while in opposition, current Health Minister Andrew Little said he was in favour of an early-access funding scheme, while Prime Minister Jacinda Ardern and National Party leader Judith Collins both promised an independent inquiry into Pharmac on the campaign trail last year.
A spokesperson for Little said he was still awaiting official advice on a Pharmac review, and would have more to say in due course.
But time is running out for many patients, Elwood says.
‘‘Can this thing happen with some pace? Because we keep falling behind. We want an urgent review, and lots of agencies do.’’