By Emily Norman
It’s not a miracle Masterton mother Allyson Lock can walk again.
It’s just lucky that she kept fighting for treatment.
Mrs Lock is one of 11 New Zealanders living with Pompe disease, a rare inherited degenerative disorder which is almost always fatal.
After her life-saving drug trial was cancelled in 2016, she battled to have the drug (Myozyme) funded by the New Zealand government.
Her attempts were futile and her fate was left “swinging in the wind” until late last year when American biotechnology company Sanofi Genzyme granted her a lifetime of free access to the drug – to be administered at Wairarapa Hospital.
She was one of four Pompe patients in New Zealand to have been accepted into the company’s international humanitarian programme which allowed for free access to the drug.
She has been having fortnightly infusions of Myozyme for the past 14 weeks.
For years prior to this Mrs Lock relied heavily on her mobility scooter and breathing machine, but now, she is able to walk freely around her house and is even walking around the supermarket – something she hasn’t been able to do in “at least five years”.
“I’m walking. I can walk right around the house now,” she said.
“The other day I walked around in the supermarket and I felt so tall – it was funny seeing things from different heights than I’m used to sitting on my scooter.”
And while Mrs Lock’s condition and outlook is improving because of the drug, she says Pharmac, which denied funding, is still “not off the hook”.
“It doesn’t let them off the hook at all,” she said.
“It needs to be funded for the rest of the people who have Pompe disease, and for people who are diagnosed in the future.
“Pharmac has put a price on our heads, and by not funding the treatment, they’re saying we’re not worth it – that’s exactly what it is.”
She said a New Zealand Pompe sufferer died last year and since then another Kiwi had been diagnosed.
“We’ve got a family with three sisters so far diagnosed.
“One is on a trial in Adelaide, one is on this humanitarian gift, and one will not be eligible for the humanitarian or trial.
“This new lady will be flapping around waiting for Pharmac to fund it, and we’ll do everything we can to make that happen.
“They are not off the hook.”
On Thursday, Mrs Lock was given her seventh infusion of the drug, while sitting comfortably in Wairarapa Hospital’s day treatment unit, just minutes’ drive from her Masterton home.
“Wairarapa Hospital is amazing,” she said.
“My appointment is at 8.30am and I was plugged in and going by 8.35 and they’re so kind and happy to do anything.
“They did everything they could to make sure this happened.”
When reflecting on her journey to get treatment, Mrs Lock gave the advice to “keep fighting”.
“Never take no for an answer.
“It’s your life. You are literally fighting for your life.
“I’ve got a lot to live for. Everybody has something to live for.”
Shame on the Government and esp the Minister of Health who does ‘run’ Pharmac. Well done Allyson, for fighting for your right, and that Myozyme is working for you.
Glad the W.T-A is following this story as it is only into its early chapters of Pompe in NZ.
Muscle Diseases have affected member if my family in the past and 2 are affected now with Pompe Disease.
Please help save their lives.