Mark Dodson, far right, with his daughter Kiara, wife Elisna and son James. Photo: Supplied
A leading haematologist and blood cancer patients in their 40s and 50s are backing calls for Pharmac to consider the wider costs of the disease in funding decisions.
It comes following a report released this week by health economist Dr Richard Milne urging Pharmac to factor in indirect costs on society from chronic illnesses in medicine-buying decisions.
That included looking at loss of income, tax and superannuation contributions and the cost of hospitalisations and comorbidities.
While the report is linked to a drug for multiple sclerosis, Milne said the thinking could be applied to other chronic long-term illnesses, including potentially some cancers - though some are more long-term than others.
"My view is that Pharmac does not weight chronic illness high enough, and the reason I say that, is that chronic illness requires a lot of extra cost when people are disabled, unable to work, they have carers to pay for, they may need to modify homes or cars depending on the disease.
"If we can treat these people early that will help, because it will reduce the cost across the whole of the population."
Consultant haematologist Dr Roger Tiedemann said parts of this analysis should be considered for blood cancer drugs too.
Blood cancer patients call for Pharmac to overhaul funding
He said in countries that fund modern medicines, multiple myeloma sufferers can have a prognosis of 10 years or longer.
"Just about every myeloma patient that I see die in New Zealand is dying too early, because they haven't had access to medicines that could have made a real meaningful difference to their lives and the lives of their family."
He pointed to one drug daratumumab, which reduces cancer progression by about 60 per cent, and extends people's lives on average by three years with few side effects.
While the average age of the cancer is 65, he said he's seen many younger patients in their late forties and fifties who would be able to live longer and have many more years of good quality survival if they had daratumumab.
"There's many younger patients with myeloma who are still working, who would have many more years of survival with daratumumab and often quite good quality survival, because daratumumab side effects are quite low - so they would be able to offer a lot to society."
But Dr Tiedemann said he doesn't think the cost-benefit logic should be taken to the extreme of only funding medicines for those deemed productive.
"I mean you'd only treat patients that were curative and were then going to work really hard all the rest of their life and pay back tax, whereas the people who paid tax all their life and then got cancer when they're 65 and just about to retire, you wouldn't treat them because it's going to cost you money."
Daratumumab is publicly available in at least 48 other countries, including in Australia, Canada and the United Kingdom. Pharmac estimates between 270 and 290 patients would access the drug each year, and it has assessed the drug as a high priority.
Privately, it costs about $220,000 per year for an individual, though Dr Tiedemann believes Pharmac could get it for a lower cost.
David Seymour Photo: RNZ / Marika Khabazi
Pharmac said the ranking of the drug is confidential to ensure officials can continue to negotiate the best price for it.
Wellington resident Mark Dodson said, at 49, he would have years of good work and productivity left if he got access to the life-extending drug.
"We are not thinking about the benefit that person brings to the community, so we are just managing money. It seems a pretty heartless way to do things."
Cancer attacked his kidneys, requiring a gruelling course of dialysis twice a week, for five hours at a time.
"If you're young and working, it's quite an ask for your employer. You've got to take time out of work, it really drains you and it's a horrible environment.
"The people in there are doing it tough, really tough."
Dodson said taking daratumumab would give him a good chance of fighting the cancer for longer and he wouldn't have to do dialysis again.
Blair Harrison, who's 53 and works in financial services, suffers from multiple myeloma but can access the drug through medical insurance, which costs him between $200 and $300 per week.
Cancer caused debilitating bone fractures in his back, but daratumumab has so-far allowed him to keep raising his four young children and to work, he said.
"At the age of 53, I do think that I have a considerable amount of career ahead of me at the highest income earning faze of my life, therefore the highest amount of tax I would be paying in my life.
"I have four children the youngest of which is two and a half going on three. The thought of not being with them in ten years was just too much to accept."
Pharmac declined to be interviewed by RNZ.
In a statement, Acting Director of Pharmaceuticals, Adrienne Martin said Pharmac wants to fund daratumumab, and is talking to its supplier.
Martin said she couldn't confirm if or when daratumumab would be funded.
"While some medicines may be available in other countries, the funding and reimbursement systems are often not comparable. New Zealand must make its own decisions, carefully assessing the available evidence and thinking about medicines use in the New Zealand health context."
Minister supports whole of society approach
The Minister in charge of Pharmac, David Seymour, said he supports the whole of society approach [ https://www.rnz.co.nz/news/in-depth/524848/david-seymour-s-whole-of-society-plan-for-tipping-millions-of-dollars-more-in-to-pharmac-and-big-pharma] to medicine funding raised in Milne's and the Multiple Sclerosis Society's report.
He said Pharmac is currently talking to an overseas expert about how that approach could work in New Zealand.
"We should be factoring in does funding a medicine have other benefits to the taxpayer such as enabling a person to work when they otherwise couldn't, because that might actually pay for a medicine we couldn't otherwise afford."
He said he first became aware of the issue when representing a young constituent with multiple sclerosis whose condition had to decline to the point she couldn't work, to be able to access the medicine.
He said he hopes to see a change of approach in Pharmac's budget next year.
"As Minister for Pharmac we are at least getting the international expertise in to see what we might be able to do about putting more money into medicines where they are going to save the Government money elsewhere.
"I think the least we can do is look into it, and I hope we will be in a position to start acting on it very soon."
Martin said Pharmac looks at health need, health benefits, costs and savings in their decisions about funding medicines, and applies that to the impact on people and society.