Access to gluten-free foods for people with coeliac disease in New Zealand

Coeliac disease (CD) is an autoimmune enteropathy occurring in response to dietary exposure to gluten in those who are genetically susceptible.¹ It occurs in around 1% of the population internationally, with higher rates in certain groups, and prevalence is thought to be increasing.^2–4 In New Zealand, the prevalence has been shown to be as high as 1.2%, but recent epidemiological data are lacking.⁵ For those diagnosed with CD, adherence to a strict, lifelong, gluten-free (GF) diet is currently the only treatment available. Strict adherence to the GF diet achieves resolution of any symptoms, and induction and maintenance of remission in most individuals, with less than 0.4% experiencing persistent symptoms when on a strict GF diet.^6–8 Maintaining adherence to the GF diet can also reduce the risk of complications of uncontrolled CD, such as osteoporosis, infertility and lymphoma, and can support normal growth in children.^9–11

However, maintenance of a strict GF diet has its challenges. The ubiquitous nature of gluten in the Western diet, and specifically in the New Zealand diet, requires people with CD to be constantly vigilant about what they consume, and to have a good understanding of hidden sources of gluten in food and potential sources of gluten contamination. 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.^12,13 This can have lifestyle implications such as anxiety and concern about eating outside the family home, sharing food and food-related activities at school.¹⁴

In many countries, including New Zealand, a range of specialist GF products have been developed to supplement the use of other naturally GF staples and to replace gluten-containing alternatives. However, although widely available for purchase, they tend to be more expensive than their gluten-containing equivalents.¹⁵ Hence, maintaining a GF diet can add a significant financial burden to individuals and families. A number of countries have implemented policies to support those diagnosed with CD in accessing reliable, clearly labelled GF products. This includes establishing labelling legislation and setting up cutoffs for foods deemed GF, ranging from <3 to 20 parts per million (the milligrams of gluten per kilogram of product).^16,17 In addition, a number of countries have also established various systems and policies to support access to GF products for those diagnosed with CD, such as tax deductions, a partial or total subsidy via prescription or direct provision of GF products.¹⁸

Historically in New Zealand, specialist GF products have been available on prescription for those who have been diagnosed with CD by a health professional, implemented as a partial prescription subsidy for a range of staple GF products. This was managed by Pharmac—a scientific advisory board appointed by the New Zealand minister of health to determine which medicines and medical products will be publicly funded within the national budget—under the guidance of the special foods advisory committee.¹⁹ However, these products ceased to be actively managed by Pharmac on 1 April 2011 and the range of products available on prescription has gradually diminished since, along with ease of access.²⁰ As of 2023, the range of prescription GF products available in New Zealand includes only GF bread mix, GF flour and GF baking mix.²¹ 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.

The aim of this study was to ascertain how New Zealanders with CD are accessing their GF products, both prescribed and commercially purchased, the cost associated with these and how these products/services are currently meeting their needs.

Methods

Participants

Participants were eligible to take part in the study if they were aged 18 years and had been diagnosed with CD, or had a partner or dependent with CD, and they resided in New Zealand.

Ethics

The study was granted ethics approval by the University of Otago Human Ethics Committee (Health) on 17 May 2023 (HD23/035).

Study design

The study took the form of a prospective observational survey.

Survey

The survey was designed with input from experts in CD and stakeholders/patient advocates from the patient support group Coeliac New Zealand.²² The survey was developed using Qualtrics (Qualtrics, Provo, UT).

All participants provided consent prior to being able to access the survey. On completion of consent, participants were asked basic demographic questions, then questions around the use of prescription GF products, the purchase of non-prescription GF products and the cost associated with these. Questions were also asked on consumer preference with regards to the range of prescription GF products in New Zealand, access to prescription products and preference for future financial support. The survey was designed to include both multiple choice and free-text questions to allow for a range of data to be gathered (see Appendix).

Survey distribution

The survey invitation was distributed by Coeliac New Zealand. An invitation to participate in the survey was included in the Coeliac New Zealand newsletter in June 2023 (n=2,195) with further promotion with a link and invitation posted on the Coeliac New Zealand Facebook page during the month of June 2023.

Statistical analysis

Data were extracted from Qualtrics into Microsoft Excel^TM for analysis. All responses were collated and reviewed, with statistical analyses of the data being descriptive in nature. Data were presented as a percentage of the total responses.

Results

Demographics

Five hundred and twenty-two people from across New Zealand completed the survey either for themselves (70%) or for their spouse (3%) or dependents (27%), indicating an estimated response rate of 24%, with all regions and age ranges represented in the survey (Table 1).

View Table 1, Figure 1–3.

Usage of prescription GF foods

Of those surveyed, only nine participants (2% of the whole cohort) currently accessed GF foods on prescription. Of the 513 participants (98%) that did not access GF foods on prescription, 127 (24%) had received GF foods on prescription in the past, 189 (37%) were not aware of the service and 197 (38%) chose not to access GF food prescriptions.

Respondents who were current users of prescription GF foods

Of the nine respondents (2% overall) who still obtained GF products on prescription, seven people accessed these through their general practitioner (GP) and two accessed these from their dietitian. The most common product received on prescription was Healtheries Baking Mix (n=7), followed by three using Horleys Flour and one using Horleys Bread Mix.

For two-thirds (n=6) of those who currently use prescribed products, these products accounted for less than half of all GF food consumed. The reported cost of prescriptions was no more than NZ$25 per month for seven out of the nine respondents.

Respondents who were previous users of prescription GF foods

One hundred and twenty-seven respondents (24%) had previously received GF foods on prescription. Of these, 58 (46% of this sub-group) had stopped over 10 years prior and the remainder in the intervening years. These GF prescription products were accessed via their GP by 103 respondents (73%), via their dietitian by 13 respondents (9%) and via a specialist (paediatrician, paediatric gastroenterologist or gastroenterologist) by 27 respondents (18%) at the time. The main reasons reported for stopping were related to the associated costs of prescription products (n=86, 67%), not being happy with the range (n=42, 33%) or quality (n=38, 30%) of the GF foods available on prescription, knowledge of ongoing access to products on prescription (n=32, 25%) and the convenience of access (n=24, 19%).

Respondents who chose not to access prescription GF foods

One hundred and ninety-seven respondents (38% of the overall cohort) had chosen not to access GF foods on prescription. Cost was the most common reason given for not using the service (n=139, 70% of this sub-group), followed by the quality of the products offered (n=50, 25%) and the range offered (n=46, 23%) (Figure 1). Two respondents who had never accessed GF products on prescription reported that this was not ever an option for them due the products not being suitable with their other concomitant allergies.

Respondents not aware of GF products on prescription

Of the 189 respondents who weren’t aware of GF foods on prescription, 178 (95% of this sub-group) would consider accessing them. Seventy-five respondents (40%) said that they would have accessed them had they been aware, 90 respondents (48%) would consider accessing them on prescription depending on the associated costs and 13 respondents (7%) would access them on prescription depending on convenience, range available and quality of the products offered.

Use of non-prescribed GF foods

All participants who completed the survey reported purchasing some GF products. When asked where respondents purchased these, 520 (99.6%) reported purchasing non-prescription GF foods from the supermarket, with 228 (44%) purchasing products online. Other sources were health food shops, bakeries and convenience stores. The most common purchases were bread (95%), pasta (93%) and flour (92%), followed by biscuits (85%) and frozen foods (84%) (Figure 2). Respondents tended to spend $26–75 per week on additional GF items (54%) with 61% of respondents (n=319) spending over $50 per week on GF foods alone. Eighty-five percent of respondents did not receive any benefits to support their GF diet.

Preferred support for GF food purchases

When asked how best they would like to be supported to purchase GF foods, 469 respondents (90%) preferred some form of GF food discount card to purchase GF products at a supermarket or other store. One hundred and eighty-six respondents (36%) would like to see an annual tax deduction for people with CD irrelevant of income, and 147 respondents (28%) would like to see allowances for GF foods based on income (Figure 3). The GF foods that respondents wished to have available on prescription tied in with the most commonly purchased GF foods (Figure 2), with most wanting pasta, bread and flour. Over half would also like to see frozen goods (n=305) and baking mixes (n=278) available on prescription (Figure 3). When asked how they would like to access these prescription products, 439 respondents (84%) said they would like to collect them from their supermarket or local store, 357 (69%) would like free home delivery and 216 (42%) would like to collect it from their pharmacy (as is current practice).

Discussion

This survey was undertaken to ascertain how New Zealanders with CD are accessing their GF products, the cost implications of this and how these products/services are currently meeting their needs. The results of this survey show a very low uptake of prescription GF products, with poor awareness of the service being a contributing factor. Compared with previous research this highlights reduced engagement with the prescription GF product service throughout New Zealand, with barriers reported as associated costs, the limited range of products available and convenience. The majority of respondents would prefer future financial support for GF food purchases to be in the form of discount cards to purchase GF products from their local supermarket or store.

The maintenance of a strict GF diet is essential for management of CD. As many dietary staples contain gluten, the advent of specialty GF alternatives allowed for increased dietary variety for people with CD. In recent years, the GF diet has become more popular for those who have not been diagnosed with CD,²³ which may have encouraged the growth in range and availability of GF products seen in many countries. This trend, however, may not be universal, with availability to GF food still more limited in some countries, including Canada, Chile, Saudi Arabia, Turkey and the United Kingdom (UK).^24–28 Burden et al.²⁸ reported that although there was good availability of GF foods in UK supermarkets and online, availability in regional budget supermarkets in the UK remained poor. Similarly, Jegede et al.²⁴ found the number of GF foods sold in chain stores to be significantly higher than in local stores in Manitoba, Canada. In fact, Qashqari et al.²⁶ found that local/budget supermarkets in Jeddah City, Saudi Arabia did not supply any GF products. Overall, this highlights the potential for significant inequities in access to suitable GF products for people diagnosed with CD, which has significant dietary adherence and health implications for these individuals.

Furthermore, despite improvements in availability and cost, GF products continue to be significantly more expensive than their gluten-containing equivalents.^29,30 Although there are expected weekly food costs for all related to the purchase of carbohydrate foods, regardless of coeliac status, a review by Coeliac New Zealand in 2021 showed GF products to be on average 2.5 times more expensive than their gluten-containing equivalents, with bread being 5 times more expensive.³¹ This difference has also been seen in a number of other countries, including Austria, Chile, Greece, Saudi Arabia and Turkey.^{25–27,32,33} In order to overcome these cost disparities, a number of countries have implemented various forms of support for those requiring a GF diet. These include tax offsets, financial support and the provision or subsidising of GF foods.^18,34 The financial implications to the health system of offering support to those requiring a GF diet were highlighted by a recent UK study, where some regions now no longer offer GF foods on prescription.³⁵ In England, national guidelines for prescribing GF products were in place until 2015, at which time local clinical commissioning groups took over, prompting significant variations in GF prescribing across England.³⁶ Participants living in regions that no longer offered GF prescriptions tended to spend significantly more each month on GF products than those in areas that did offer prescription products, highlighting the potential financial implications for those in the lowest income brackets.³⁵

A partial subsidy for prescription GF products offered by Pharmac, the organisation appointed by the New Zealand Ministry of Health to determine funding of medicines and medical products, is available to support people diagnosed with CD who live in New Zealand. However, uptake of this service was found to be very low, with only 2% of the respondents in the current study accessing GF products on prescription. The apparent low uptake of prescription GF products seen in this survey is consistent with data provided by Pharmac, indicating a 38–71% decline in the number of people obtaining the three remaining available prescribable products over the last 7 years.³⁷ Nationally, only 21 unique users ordered Horleys Bread Mix in 2023.³⁷ This may be due to a number of factors, such as poor awareness of the availability of GF food on prescription and how to access this service. With such a high reported unfamiliarity with prescription products and how these could be accessed, further investigation is warranted. Literature exploring access to support schemes provided to those with CD appears sparse both in New Zealand and internationally. Pharmac stopped actively managing prescribed GF products in New Zealand in 2011.²⁰ This means that no new products have been added to the range offered, and subsidies for the products available have not changed since. Subsequently, the range of products available has gradually decreased over this time, while the cost of these products has increased due to increasing product costs, without increasing subsidy. Considering the perceived cost barriers to accessing prescription GF foods, such as charges for the GP appointment, prescription, pharmacy, and the cost of the products after the subsidy, it is often not financially viable to obtain products on prescription. This is circumvented in a number of countries with the use of subsidies or cash transfers; however, this requires people with CD to source their own GF products and then be reimbursed.¹⁸

The associated healthcare utilisation costs of non-adherence to a GF diet for people with CD should also be considered if access to GF foods becomes prohibitive. Long-term untreated (or under-treated) CD could lead to reduced work productivity (due to sick days), impaired quality of life or reduced achievement in education.^38,39 Furthermore, this could lead to higher rates of complications such as osteoporosis (leading to costly treatment or management of related fractures), or costs for fertility support.⁴⁰ Therefore, providing ongoing support for people to adhere to a GF diet as the only current treatment modality for CD is imperative, particularly for more vulnerable populations. A recent study indicated that restriction or withdrawal of prescription GF products was shown to disproportionately affect access in those with an illness or disability, those with mobility issues and those on lower incomes.⁴¹ This raises equity concerns with the gradually declining range and increasing cost of GF products available on prescription in New Zealand. Although there appears to be a good availability of GF products online and in larger supermarkets, as shown by studies in the UK and Canada these require access to transport or sufficient literacy with online platforms to access suitable GF products and do not take in to account the increased costs of GF products seen both in New Zealand and internationally.^24,28,31 Some potential limitations to the results should be mentioned. Firstly, there was a strong female response bias. Although we do know that slightly more females than males are affected by CD, it does not account for the significant female bias in the response rate of 84%.⁴² Further to this, due to our recruitment and distribution methods using a Coeliac society membership—a paid membership society—respondents are likely to be more informed and have differing needs and opinions to that of the general CD population, which must be considered when interpreting findings.

Conclusions

With the very low uptake of prescription GF products throughout New Zealand seen in the current survey, more research is required to assess how this population can be supported to access a GF diet, the current mainstay of treatment for CD. Poor awareness of the availability of prescription GF products seen in a large proportion of the cohort indicates that increased promotion of the service may be required if the service is to continue being offered. However, clear limiting factors such as the increasing associated costs and diminishing range available on prescription may still limit uptake. This study highlights that the majority of respondents would prefer future financial support in the form of discount cards to independently purchase GF foods, as opposed to offering prescription products. This would allow more flexibility of access, convenience and range of products, and may in turn drive the innovation and development of more palatable, less expensive GF products in the future. Further investigation is warranted into how those with CD want to be supported and how best to maximise equity of care across New Zealand.

View Appendix.