'It's absurd' - allergy sufferers beg Pharmac to fund EpiPens

Medicines NZ
For nine year old Dylan Wright, with mum Rebecca Oliver, EpiPens are a constant and crucial companion. Photo credit: Supplied

An ice cream factory in the family sounds like every child’s dream. But for Dylan Wright, just setting foot in the door put his life in danger. At 10 months old, as his mother Rebecca Oliver held him in her arms, he started gasping for breath. "I couldn’t figure out what was going on," she says. "And then his eyes started rolling back in his head and he went all floppy."

Dylan’s tiny body was battling a dairy allergy so severe that traces of milk powder in the factory’s air were triggering anaphylaxis. He was raced to hospital for a life-saving shot of adrenaline, and his parents went home with a device that would become his constant, crucial companion - an EpiPen. 

Thousands of New Zealanders rely on the auto-injector, but only if they can fund it themselves. The EpiPen, which costs up to $180, has been languishing on the medicines waiting list for Pharmac funding for 14 years. Dylan - who is now nine - needs two at home, and two at school. They can only be used once, and expire after 12-18 months.

The alternative is a $1 glass vial of adrenaline, which is funded by Pharmac, but must be administered with a needle and syringe. Allergy specialist Dr Maia Brewerton says that method is unacceptable.  "For those who are at risk an EpiPen is essential. I don’t prescribe adrenaline ampoules and needles because they are not equivalent in terms of safety for patients," she says.

Dylan has had anaphylaxis half a dozen times. Doctors found he wasn’t just allergic to dairy: just a trace of wheat, eggs or nuts could cause a medical emergency. Rebecca says the most memorable reaction was to kiwifruit, when he was three.

"His lips swelled, his face swelled and he turned this awful shade of green. Hives the size of 50 cent pieces started appearing all down his body, Everyone was shaking and panicking but we grabbed the EpiPen and put it into his leg through his clothes and within a couple of minutes he was able to breathe again."

To use an ampoule of adrenaline, users need to break open the glass vial, measure the correct dose into a syringe, assemble it, and push the large needle into the muscle. Experts say that’s a lot to ask of people who are panicking because they, or their child, can’t breathe, and any delay can be critical.

"We have very good evidence that the earlier adrenaline is administered during anaphylaxis the more effective it is in terms of treating the patient and preventing fatalities," Dr Brewerton says. 

She spent three years working in Australia, where auto-injectors have been funded since 2003. Patients can get two EpiPens for a $40 fee.

"It's difficult to see patients here who can’t afford it and can’t access it. It’s frightening," she says. "I think New Zealanders should have that same access here. The lack of funding affects our most vulnerable communities and that’s not what the public health system is about - it should provide equal care to all."

Allergy NZ advisor Penny Jorgensen points to Auckland University research which showed the rate of Pacific Island admissions to hospital with anaphylaxis is three times that of any other ethnicity.

Allergy NZ advisor Penny Jorgensen says they're concerned for people living in lower socio-economic communities who find it more difficult to manage allergy risks. Photo credit: The AM Show

"It doesn’t necessarily mean a higher rate of food allergy, but they have a great deal more difficulty in managing the risk," she says. "It may be reflective that they’re often living in lower socio-economic circumstances. Those are the communities we’re really concerned for. It seems to us really bizarre that Pharmac can’t see that." 

Pharmac says it does understand the value of auto-injectors, but it must work within a fixed budget of public money. "We must make careful and considered choices about which medicines to fund that will deliver the best health outcomes for New Zealanders," director of operations Lisa Williams says. "We take this responsibility very seriously.

She says the EpiPen is 100 times more expensive than an ampoule containing the same active ingredient. Funding it would take money away from other treatments.

"Only the EpiPen brand of adrenaline auto injector is currently registered in New Zealand by Medsafe, which is why the supplier, Mylan, is able to set a high price," Williams says.  

But she notes that Pharmac is in contact with multiple suppliers of auto-immune injectors in the hope that a device could be funded at the right price.

Rebecca Oliver would like Pharmac to consider more than just cost. The EpiPen gives Dylan the freedom to go to school, play sports, and visit friends because she knows others can use it easily in an emergency. Life looks very different for families who can’t afford one at all.

"It’s more than just cost, in that it affects your quality of life and the ability to participate fully in everyday life," she says. "In Australia it is subsidised. It’s absurd that they’re not doing the same here."

Allergy Awareness Week takes place in New Zealand from May 12 - 18.

This article was created for Medicines NZ