The petition calls for an increase in subsidy for wigs and hairpieces. Photo: Getty

‘A world of difference’: New Zealanders with alopecia call for boost in support

A petition seeking an increase in subsidy for wigs and hairpieces is being presented at parliament today. Kirsty Frame reports.

Alopecia can be unforgiving. Many of those with the autoimmune disease find themselves entirely without hair within weeks or across months, and the vicious cycle can relapse over a lifespan. It has neither known cure nor obvious cause.

These new realities present an emotional and physical mountain to overcome. Because so few live with alopecia, it’s easy to stand out and harder to blend back in. Many find that specialised wigs and cosmetic tattoos restore their confidence, improve mental health, and alleviate stress. These products aren’t cheap.

In the early 2000s the government recognised this and introduced a wig subsidy under the Public Health Act. As it stands today, a person with alopecia totalis or universalis (the two permanent tiers) is entitled to $2330.66 over a nine-year period. For someone with alopecia areata, the form that brings patches of baldness, it’s $408.88 annually, and for those under 18 it’s $1226.88 every three years, because, well, kids’ heads grow.

But those with first-hand experience say the subsidy is “minuscule” when weighed against the actual costs of products and the frequency they need replacing. Consequently, some are spending thousands on top of their subsidy or having to adapt without.

Members of the alopecia community are today presenting a petition to parliament calling for financial support that better reflects their realities. The petition asks for the claim period to be shortened to two years and the funding increased to a “reasonable” amount, for services like eyebrow microblading to be introduced under the subsidy, and for wigs to be GST free.

“These things make a world of difference for people,” says Paul Jackson, the organiser of the petition. Jackson lost his hair as a child in the 70s, and has long been heavily involved in the alopecia community in Aotearoa. While travelling in his 20s, Paul became acquainted with international alopecia networks and charities. Upon returning home, he was surprised to see how limited the networks were in New Zealand. So in 2005 he set up a Facebook group, which now boasts a membership of many hundreds. Many have found solace and connection here, being able to discuss their difficulties, seek advice, and compare prices.

Their argument is that nine years is too long a period to stretch the subsidy over. Wigs cost a lot of money, and deteriorate when worn full-time. Synthetic-hair wigs might cost $500 and last six to 12 months. A more sought after quality human-hair wig can begin at $2600 and increase with the length of the hair. While these wigs last much longer than synthetic counterparts, most will not last beyond five years with frequent use.

“I acknowledge the personal distress alopecia can cause and the affect it can have on a person’s self-esteem,” the minister of health, Andrew Little, said. “There is financial support. Some people say that it is not adequate. We don’t have any plans at this stage to increase funding at this point, but it is a matter that I will keep in mind.”

Charlotte Glennie has had five wigs over the last seven years, a mixture of synthetic and human-hair. Three were during high school, and while her parents were able to get the child subsidy, they still had to fork out most of the costs over the five year period, which, she says, was “really hard” on them financially. Now 20, Glennie has used her full adult subsidy already, which only covered part of one. She says having to pay for wigs as well as university is hard, but she has to make do.

“I remember though when I first put [my wig] on and people telling me, ‘wow you look amazing.’ It made me feel great. I was lucky because my school was quite supportive.”

Deanna Beattie, from Freedom Hair, a wig provider based in Dunedin, says she often feels like an “ambulance at the bottom of a really horrible mountain”.

Deanna has been supporting those with alopecia through her business for a number of years now. It was her own daughter’s diagnosis that led her to providing support for their clients. She says a person who has or has had alopecia carries “an instant empathy and understanding of the trauma someone may be going through”.

While not every person with alopecia will wear a wig, “it’s about having access to the options”, says Jess Bennett, who wears her wig intermittently. Her wig gave her the tools and confidence she needed to make other decisions with clarity and feel comfortable with herself again. She feels empowered by having the choices now – will she wear her wig today, a scarf, or will she wear nothing? “I think that’s what people need to find their comfort with alopecia. If they don’t have those options available, where do they find where they sit?”

It’s the financial stress that is adding salt to the wound, says Paul. “The effect on people’s mental health is taxing, so many people don’t want to go outside — why not improve that for the people who can’t handle it?”

Paul says if the requests made in the petition are heard, it’ll be the “best possible result” the alopecia community can get.




The Spinoff is made possible by the generous support of the following organisations.
Please help us by supporting them.