Josh

It was a big, blue-sky summer’s day and three-year-old Josh was making the most of it. He was outside, barefoot, and enjoying the carefree, busy life of a preschooler.

“It was really just like any other day. Josh was doing what kiwi kids do, and he was playing outside having fun.”

Josh, who is now five, is the youngest of Emma’s two sons. The boys keep her on her toes, but she says she’s “a pretty relaxed mum”.

Suddenly, Josh started crying and through his tears he told Emma a bee had stung his foot.

Emma put some ice on his foot and held Josh, comforting him while she waited for the ice to soothe the sting. Both Emma and her husband Marshall talked about whether Josh had been stung before. Neither could remember, but they thought he had.

It wasn’t until twenty minutes later, the coughing started.

“He was trying to get air. We didn’t realise it straight away, but he was struggling because he couldn’t get enough air….”

The coughing was almost immediately followed by a blotchy, red rash that covered Josh’s body from head to toe.

“My husband said to me ‘this isn’t normal’ and we grabbed the keys, jumped in the car and raced to the hospital.”

The family live around eight minutes from Auckland’s Waitakere Hospital and the traffic, thankfully, wasn’t heavy at the time.

“I drove, and my husband was in the back seat with Josh, and we went straight to the front door of the hospital, and I jumped out.”

Emma grabbed Josh and ran into Accident and Emergency.

“They took one look at me….Josh was struggling to breathe, his body was covered in this awful rash, and suddenly the nurse was racing us through the hospital. I’ve never moved so fast in my life.”

In just seconds, Emma and Josh were surrounded by half a dozen medical staff, all firing questions at her. Josh was in anaphylactic shock, a rare but severe allergic reaction that can be deadly. The most common cause is an allergy to foods like nuts and shellfish, insect bites and some medications. Josh was allergic to the bee venom.

“I think I was in survival mode. I was quite calm. I was just trying to answer all their questions. They were asking so many….what had happened? What stung him? Had he been strung before? Did I know if he was allergic to anything? How old was he? Had we given him any medication in the last couple of hours? How much did he weigh?”

Emma says within two minutes of arriving at hospital, the doctors administered Josh with a shot of adrenalin.

“It was amazing. He was breathing normally again pretty quickly….it all happened very, very fast.”

It was the most terrifying 20 minutes of their lives, but it was how Emma and Marshall discovered their son was allergic to bees.

“I just couldn’t believe it. One minute we’re at home, the next we’re surrounded by a crisis team in hospital.”

In the days that followed, Emma and Marshall questioned themselves a lot. What if they had left it another two minutes before they went to hospital? What if there had been traffic? What if they hadn’t made it? Did they respond fast enough? Should they have called an ambulance? What if their decision had cost him his life? Should they have been more attentive?

“You ask yourselves so many questions, but I think one of the hardest questions is ‘what next’? Our job is to protect our children, and neither of us knew how we were going to keep Josh safe.”

Emma and Marshall were told an EpiPen would be the best option. It’s an auto-injector of adrenalin which quickly improves breathing, stimulates the heart, and reverses dropping blood pressure. It’s not publicly funded in New Zealand.

The EpiPen tops Pharmac’s List of Shame for unfunded medicines. This life-saving medication for sufferers of serious allergy has been on Pharmac’s waiting list for more than 15 years. Pharmac, our chronically underfunded pharmaceutical agency, doesn’t have the funds.

The EpiPen is an adrenaline auto-injector which, when pressed into the thigh, automatically releases a needle injecting a set dose. It costs around $120, and expires every year or after a single use. Most parents need several; they keep them at home, school, with a caregiver, and at both homes if the child’s parents live apart.

Emma and Marshall pay for their Epipens “but it really made me think about families who aren’t in our position. How do they keep their kids safe when they’re struggling to put petrol in the car, or food on the table?”

If parents can’t afford an EpiPen, they are sometimes given a supply of adrenalin and a syringe. If their child goes into anaphylactic shock, they have to administer the drug.

“I can’t imagine being in a situation where my child is struggling to breathe, and I’m trying to draw the right amount of adrenalin out of a bottle, make sure I know my child’s accurate weight, and then try to get an injection into the right place to save his life.”

Emma says no parent should be put in that position.

“This is a life and death situation. There is a medical device that will automatically administer adrenalin quickly and easily, why wouldn’t we fund it? Help us to help our children.”

Emma says Josh’s school takes the issue of allergy seriously and she provides them with an EpiPen. Josh’s teacher has a pen, and any teacher on lunchtime duty carries one too.

“If Josh gets stung again, it’s likely his reaction will be worse. The first time your body takes a while to react. The second time, your body recognises the venom straight away and will go into shock a lot faster. You live with this. You are always conscious of it.”

Emma says Josh is cautious of bees and if he sees one, he’ll run away. But she also says Josh is a typical kiwi kid who likes to run outside and play, and he doesn’t always remember he has a life-threatening allergy.

“I’ve got jandals all around the house and he knows he needs to wear them, but sometimes I’ll see him running across the grass in bare feet and I think, ‘here we go, he’s playing Bee Roulette’.”

For many years, EpiPen has been the dominant provider of auto-injected adrenalin. Pfizer manufacturers the EpiPen, and Viatris (formerly Mylan) markets the treatment. Pfizer and Mylan have both previously been involved in lawsuits in America, accused of anti-competitive behaviour.

However, Australia recently funded an alternative called the AnaPen. It comes in three strengths and, unlike EpiPen, it includes a volume to treat people over 60kgs.

If Pharmac can secure additional funding from the Government, it could use its monopolistic influence to negotiate a reduced-price deal and finally, after more than 15 years, subsidise an adrenalin auto-injector for New Zealanders.

In the meantime, many families are forced to rely on ambulances and emergency departments to treat their children, adding additional strain and cost to our primary health providers, and unnecessary stress and trauma to families.

Emma says the Government needs to consider the cost of not funding these devices. She says the summer months are the worst for her, but for parents who have children with food allergies, there is no let up.

“It’s really important to support people with severe, life-threatening allergies. No-one should have to live in constant fear of someone they love dying from anaphylactic shock.”

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