‘So mentally draining’
Julie said she was not a typical sufferer, with most media coverage focused on scabies being an issue in student flats, schools or rest homes.
“I didn’t even know anyone that had ever had them either. And my kids hadn’t had them,” Julie said.
She contracted scabies without knowing where she could have got it from and may have unknowingly spread it during the weeks before her itching began.
Because the symptoms were unfamiliar to her, Julie said it took a month of “intense suffering” before she received an accurate diagnosis.
She originally thought she was having an allergic reaction, but her condition continued to worsen.
“I just couldn’t sleep at night. I was taking so many drugs just to try to sleep due to the itch,” she said.
Following her diagnosis, she was given a topical treatment for both her and her husband, who had not shown symptoms yet.
He remained asymptomatic for months before he started to show signs too.
After the treatment did not work, Julie went back to the doctor and was told she was likely suffering from “post-itch syndrome”.
Julie, 65, told the Herald she received her scabies diagnosis in early April after never having had it before.
“I waited another week, and then it got way worse, and you could see the little burrows, they make lines on your body.”
After she returned to the doctor, she was told she had scabies yet again, and she was given Ivermectin.
“Every three or four weeks, it [scabies] keeps coming back,” she said.
Julie said the situation had caused great disruption to her life, including multiple doctors’ fees and hours of cleaning her home during treatments.
“Your mental health is just terrible. When I first found out, I was pretty horrified because I thought it was a dirty disease.
“I’ve kind of got used to it now, but every time it happens it’s made me cry because it’s so mentally draining.”
Julie said they had done “every single thing you could possibly do”.
Some of the protocols they “meticulously followed” included 60C hot washes, high-heat drying, and abandoning their bedroom to sleep in a different room for a week.
New research shows infestation with the parasitic scabies mite is linked with developing rheumatic fever. Photo / 123rf
She said medical professionals informed them that the mites they were fighting were likely resistant to New Zealand’s standard prescribed treatments.
“Our story is not unique.
“I think the problem in New Zealand is when people get it, they keep quiet about it because they don’t want to tell anyone,” Julie said.
National Public Health Service chief public health clinical officer Maria Poynter said Health NZ recognised that scabies caused “real difficulties” for some communities.
“Scabies is not a notifiable disease, so we do not have national case numbers, but we are hearing that it is a concern in some places,” Poynter said.
She said Health NZ has worked with Pharmac to make the treatment permethrin more available at a lower cost, and has updated HealthEd resources to help the public prevent reinfection.
Push for new treatment
Julie said after five failed treatments, she and her husband were growing increasingly frustrated with the treatment options available.
She hoped for a treatment like Spinosad (Natroba), which was used overseas.
Pharmac’s director of advice and assessment and chief medical officer Dr David Hughes said before Pharmac could fund a medicine, an application must be submitted through its assessment process.
Hughes said an application has yet to be submitted for Spinosad (Natroba).
Medsafe is New Zealand’s medicines regulator and is responsible for determining if a medicine is safe and effective for use in New Zealand.
“Pharmac can consider funding applications for medicines at the same time that Medsafe is reviewing the regulatory application; however, a medicine could not be funded through Pharmac’s application process until Medsafe approval has been received,” Hughes said.
He said Pharmac received an application for permethrin (A-Scabies) to treat scabies under a practitioner supply order in August 2025.
The application is currently at the clinical assessment stage of Pharmac’s application process.