Only about two percent of people with coeliac disease are getting gluten free foods on prescription, with a third of those surveyed not even aware of the service.
A strict gluten free diet is the only treatment for the disease, which affects about 1.2 percent of New Zealanders, causing a range of debilitating gut problems, fatigue, poor growth in children and thin bones in adults.
Otago University research published in The New Zealand Medical Journal Friday shows of 522 patients surveyed, 127 (24 percent) had accessed products on prescription in the past but just nine (2 percent) still did so.
Cost and limited product range were the main reasons they had given up - but maintaining a strict gluten free (GF) diet was "challenging" and required constant vigilance, researchers noted.
"Many foods that would ordinarily be naturally GF can be altered to contain gluten during processing. Additionally, non-food sources, such as cosmetics and Playdough, can lead to inadvertent exposure.
"This can have lifestyle implications such as anxiety and concern about eating outside the family home, sharing food and food-related activities at school."
While GF alternatives were available, they tended to be more expensive, adding thousands of dollars extra to grocery bills over a year.
Historically in New Zealand, specialist GF products were available on prescription for those diagnosed with coeliac disease.
However, those products ceased to be "actively managed" by the government's medicine funding agency Pharmac in 2011.
Since then the range of products available on prescription had dwindled, until it was limited to GF bread mix, GF flour and GF baking mix.
"The home delivery service, unique to parts of the South Island of New Zealand, was also discontinued in 2023, with all prescription products now requiring pharmacy collection."
Ninety percent of those surveyed would prefer a discount card to buy GF products.
- Of those surveyed, only nine participants (2 percent of the whole cohort) currently accessed GF foods on prescription.
- Of the 513 participants (98 percent) that did not access GF foods on prescription, 127 (24 percent) had received GF foods on prescription in the past
- 189 (37 percent) were not aware of the service
- Cost is the biggest reason for not accessing prescriptions: 139 (70 percent) of this sub-group), followed by the quality of the products offered (25 percent) and the range (23 percent)
- More than half of respondents (54 percent) spend more than $50 per week on GF foods, 13 percent over $100 and 7 percent over $200
- Most respondents (90 percent) would prefer a discount card to purchase GF products.
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