Ben Rose's daughter Becky spent her 10th birthday in hospital after being diagnosed with Crohn's disease at the age of 9.
When Ben Rose’s 9-year-old daughter was diagnosed with Crohn’s disease, he says the family found themselves in an impossible situation - one with a price tag of nearly $40,000 a year.
The recommended treatment for Becky was going to cost the family $6000 every eight weeks as it was not funded by Pharmac.
“We went through a pretty challenging journey with her where we discovered the whole world of medications that aren’t funded by the Government, and what happens if you have a tough choice to make,” says Rose.
“We hadn’t realised there were medicines that you can get in other countries – Australia, the UK – but you just can’t get here.”
Becky was diagnosed in 2019 after more than a year of “debilitating” stomach aches.
“She was screaming and crying and we were in and out of the hospital, [there were] ambulances and tests and lots of needles,” Rose says.
He and wife Tali had never heard of Crohn’s disease, until their daughter was diagnosed.
It’s a type of chronic inflammatory bowel disease in which the immune system attacks the digestive tract, causing pain and inflammation. The symptoms include severe pain, fatigue, loss of appetite and weight, and diarrhoea.
There is no cure, and the disease can become so severe that sufferers require surgery.
“By the time we got the diagnosis, it was quite advanced, and it turned out that she had to have part of her bowel removed. It was a real challenge,” Rose says.
Becky tried several different funded drugs to manage the disease.
“Unfortunately she turned out to be in a very small percentage of people who rejected those and developed antibodies to those, so we ran out of options.”
Her specialist at Starship suggested trying the drug ustekinumab, which was unfunded at the time. It came at a cost of around $6000 per dose, administered via an injection every eight weeks.
Rose says they were fortunate to have extended family members who contributed to the cost, while he and Tali pulled equity from their home.
“We had to completely refigure our finances. We overhauled our whole budget to make it work ... we just had to eliminate anything that wasn’t absolutely necessary.
“It was really tough.”
But he says it would have been tougher to see his daughter continue to suffer.
“As a parent, it is the absolute worst thing to see your kid genuinely writhing in agony and know that if you happened to be in a different place, you could just get it sorted.
“It’s not the choice that any parent wants to be faced with. For us, it was as bad as it gets.”
Many families don’t have the option to self-fund treatments like this, he adds. It’s why Crohn’s and Colitis New Zealand campaigned for the drug to be funded by Pharmac.
From February 2023, ustekinumab was funded for inflammatory bowel disease, including Crohn’s and ulcerative colitis, that has not responded to other treatments.
It means today, Becky, now 16, is “in a great place”, as her treatment is now fully funded.
“But there are lots of drugs that aren’t. There are lots of drugs that could make a massive difference to people’s quality of life, that [people] may assume are available because they are in other countries that we often trade with, but they’re not.”
Rose, who is the chair of charity Ronald McDonald House, has seen first-hand how the lack of funding for treatments like this can impact families in New Zealand.
“There are new and more advanced treatments [available], which is brilliant, particularly if you think about things like autoimmune disease and cancer, but they come at a cost ... you could be looking at up to half a million dollars for some of these.
“Pharmac plays a role, but there’s only so much money they’ve got to play with.”
Some people faced with having to pay for unfunded medications choose to move overseas to seek treatment if they are funded elsewhere, while others rely on Givealittle fundraisers or sell their homes and belongings.
“Those are the real choices that people are making every single day,” Rose says.
A growing number of insurance companies now offer non-Pharmac cover as an add-on to health insurance policies.
It’s something that wasn’t an option at the time of his daughter’s diagnosis. If it had been, Rose, who works for AA Insurance, where this policy is now available, says “we could have saved Becky a huge amount of pain”.
“She would have ended up having fewer surgeries. We would have a smaller mortgage. We would probably own a bit more of our house, and the same for all of our family who chipped in.”
As with all types of insurance, the cost of this cover per year differs depending on age, gender, and whether you smoke.
In New Zealand, insurance providers including nib, AIA, Southern Cross and Partners Life offer cover for unfunded drugs, capped at different amounts ranging from $10,000 to $600,000 a year.
The cost of adding non-Pharmac cover to your health insurance depends on the level of cover you choose, as well as your personal situation. For example, adding nib’s Non-Pharmac Plus cover to your hospital cover will cost you from $1.28 weekly with a cover limit of $50,000 per policy year.
Malcolm Mulholland, chair of advocacy group Patient Voice Aotearoa, says the impact of having to self-fund medicines can be “devastating” for Kiwis.
“For some people it’s a matter of life or death,” he says.
“Often I hear of heart-breaking conversations that are had among families about whether or not they place their family into debt, or they die earlier than they should. That can be the cold, hard reality of reduced medicine access as a New Zealand patient.”
This can mean people seek funded treatments elsewhere.
“We’re basically at the bottom of the developed world when it comes to medicine access, and some people do look to go overseas, in particular to Australia.”
Bethany Reitsma is a lifestyle writer who has been with the NZ Herald since 2019. She specialises in all things health and wellbeing and is passionate about telling Kiwis’ real-life stories.