As Hanna Meates wraps her tattooed limbs around a pole and her long, fiery curls fall across her shoulders, her slender torso holds the weight of her balance.
It’s hard to believe this towering 1.82m former beauty contestant and pole fitness enthusiast could die at any moment, unless she can access a new life-changing drug.
Hanna, 27, a Wellington-based student teacher and self-described “party animal”, suffers from cystic fibrosis (CF), a genetic condition affecting the digestive system and lungs. Diagnosed as a newborn, the trainee kindergarten teacher is a carrier of two CF genes – one that’s the most common and another, the most uncommon.
Kindy teacher Hanna keeps herself strong through pole dancing. Image: Alexa Shaw
As her devoted mum Maree Davies-Meates attests, countless hospital encounters and a daily concoction of medication won’t save her precious girl from the disease, but one pill could.
“In 2012, Kalydeco was introduced overseas, a drug that could shut off Hanna’s symptoms completely and turn her from another CF death to a CF miracle!” says Kapiti Coast-based Maree, 51.
“It improves the lives of those with the most uncommon CF mutation, like Hanna, and I’ve seen it accepted in every first world country, except New Zealand.”
At the moment, it would cost Hanna about $300,000 a year for Kalydeco, which Pharmac passed for consideration recently but labelled as a low priority.
“This means it could take 10 years before the drug is available here and that’s just too late,” explains the travel consultant, also mum to Emalee, 25, and Felix, 17, with husband Matthew, 53.
For Hanna – whose biggest dream is to become a mother – having Kalydeco would spell less treatments and knowing that if she does have a family, she won’t be leaving children behind.
“While everyone else just goes through life, I have to keep myself alive and it’s a weird thing,” tells Hanna, who uses nebulisers twice a day to help her breathe and ingests 15 tablets.
She’s also had various surgeries, including the removal of her gallbladder.
“It can be pretty depressing sometimes, but my family’s really supportive,” says Hanna. “I know it’s hard for them to have to watch too.”
Kalydeco could shut off Hanna’s symptoms completely.
Maree recalls cradling her eight-week-old baby and being asked if there was CF in her family, after Hanna’s newborn heel prick test.
“I remembered my cousin died at four, but not the name of the condition,” tells Maree.
“I rang my mother and she told me it was CF. I couldn’t talk at that point because in my mind that was exactly what was going to happen to this beautiful baby.”
Hanna knew she was sick as a girl and Maree recalls, “One of the hardest things I ever heard my child say was the song she wanted played at her funeral. It was Celine Dion’s ‘Fly’. As a mother, your heart is bleeding from your chest.”
But Hanna grew into an adventurous young woman, even bungee jumping with her doting mum recently.
“You see these staunch guys get to the edge and walk away because they can’t do it, and it took me a few minutes to find the courage to jump,” Maree laughs. “But Hanna went straight up to the edge and over, with no hesitation! She’s always done everything really fast.”
Maree can’t sit by and watch her girl succumb to CF.
As well as praising her eldest child for being sweet and empathetic, the proud mum says Hanna will make an incredible teacher – if she gets the opportunity.
“She’s wonderful with kids and wants to incorporate photography into primary teaching,” says Maree. “She’s won awards for photography.”
Currently, Hanna tries to coordinate hospital visits with her university holidays so she doesn’t miss her studies.
“The problem with CF is once they get a chest infection, the mucus doesn’t disperse and it causes infection and lung damage,” says Maree. “She’s not long out of hospital and I’m already starting to notice she’s not recovering as well, so we feel like we’re in this last-ditch stage now.”
Now, the desperate family is pushing for Kalydeco to be made available for Kiwis sooner.
“How do you watch one of your children deteriorate in health, knowing that within this beautiful country I can’t make anybody listen to me?” asks Maree, who has sent multiple letters to Parliament.
“How can you turn to someone and say they’re not worthy of the money it takes to live, when there’s a drug that would do that for her? It’s painfully frustrating.”
Hanna, seen here at seven moths old, was diagnosed with CF at eight weeks old.
Pharmac chief executive Sarah Fitt says the low priority recommendation for funding of Kalydeco (Ivacaftor) is due to the “moderate quality evidence of health benefits, the limited availability of long-term data and the high cost.
“Ivacaftor remains on our options for investment list, however, we cannot give a timeframe for when it will be funded.”
Ten years ago, Maree sat in a church at the funeral of a 15-year-old local girl who had died from CF, with Hanna next to her, coughing away.
Maree concludes, “Parents of children with conditions like CF suffer every day with the pain of imagining what’s coming and there’s nothing you can do. I can’t imagine not having that fear and waking up one day without this weight on my heart.”
