Mark Dodson, far right, with his daughter Kiara, wife Elisna and son James. Photo: Supplied
Blood cancer patients in their 40s and 50s are urging Pharmac to overhaul its funding model and consider the wider costs of the disease in funding decisions.
It comes following a report released this week calling for Pharmac to factor in indirect costs on society from chronic illnesses in medicine-buying decisions.
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 for multiple myeloma, daratumumab.
Daratumumab is publicly funded and is used as the standard of care in at least 48 other countries including Canada, the United States and Australia, but not in New Zealand.
"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."
Daratumumab would give him a good chance of fighting the cancer for longer and he would not have to do dialysis again, Dodson said.
Blair Harrison, who was 53 and worked in financial services, suffered from multiple myeloma but could access the drug through medical insurance, which cost him between $200 and $300 per week.
Cancer caused debilitating bone fractures in his back, but daratumumab had 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 phase 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 10 years was just too much to accept."
A report this week by health economist Dr Richard Milne called for Pharmac to consider the wider fiscal impact of funding or not funding drugs for chronic illnesses. This included looking at loss of income, tax and superannuation contributions and the cost of hospitalisations and co-morbidities.
Although the report was linked to a drug for multiple sclerosis, Milne said the thinking could be applied to other chronic long-term illnesses, including some cancers.
Some ilnesses were more long-term than others, however.
"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."
Blood cancer patients in NZ dying too early - specialist
Consultant haematologist Dr Roger Tiedemann said parts of this analysis should be considered for blood cancer drugs too.
Studies showed daratumumab could extend life by an average of three years, and in countries that funded modern medicines, multiple myeloma sufferers could have a prognosis of 10 years or longer, he said.
"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."
Although the average age of those with the cancer was 65, he had 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, he said.
But Dr Tiedemann did not 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."
The Minister in charge of Pharmac David Seymour had said Pharmac was talking to an overseas expert about how a whole-of-society approach to drug buying 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."
Seymour said he first became aware of the issue when representing a young constituent with multiple sclerosis whose condition had to deteriorate to the point she could not work, in order to access the medicine.
He said he hoped to see a change of approach in Pharmac's budget next year.
Pharmac response
In a statement, Pharmac's acting director of pharmaceuticals Adrienne Martin said the agency looked at health need, health benefits, costs and savings in their decisions about funding medicines, and applied that to the impact on people and society.
Pharmac wanted to fund daratumumab, Martin said, but she could not confirm if or when it would be funded.
"We keep the rankings on the 'options for investment' list confidential to ensure we can continue to negotiate the best prices for medicines so more New Zealanders can access the medicines they need."
Pharmac had widened access to medicines for people with multiple myeloma, including lenalidomide and pomalidomide, Martin said.
"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."
