The canary in the coal mine for inequality

I got to know 10-year-old Ruby at her school in South Auckland, where I was doing my doctoral fieldwork about children’s experiences of health and illness.

Bright, a maths whiz, and the bold leader of her friend group, Ruby lives in a state house with 17 other family members, including her young cousin who recently had heart valve surgery after developing rheumatic fever. To protect herself from getting it too, Ruby visits her school “sore throat” clinic regularly for a throat swab, because, she tells me, if we’re too late, “we can pass away”.

Rheumatic fever is usually associated with developing countries, but over the last few decades, rising rates of this autoimmune disease have affected children in New Zealand like Ruby’s cousin. Though deaths from rheumatic fever itself are unusual, the inflammation can cause damage to the heart valve, and up to 200 New Zealanders a year die from the subsequent rheumatic heart disease later in life.

Linked to socio-economic deprivation and overcrowding, rheumatic fever can be thought of as a canary in the coal mine for inequality, signalling where communities are systematically experiencing unhealthy living conditions. In New Zealand, the disease almost exclusively affects Māori and Pasifika children, which tells us that we are still not doing enough to ensure equality of wellbeing for all New Zealanders.

The Ministry of Health recently reported that after eight years of prevention efforts, rheumatic fever rates have rebounded to match the rates we saw in 2012. Sadly, this is not really a surprise. While the causes of rheumatic fever are complex, evidence has strongly implicated housing conditions as a major factor. Yet the government’s approach to rheumatic fever prevention wasn’t to change the coal mine - it was to medicate the canary.

Instead of housing policies to address the conditions that foster a range of illnesses, including throat infections, children like Ruby got a “sore throat” clinic in their school. Every day, Ruby and her classmates were asked ‘who has a sore throat’, and those who said they did were sent to the clinic to have their throats swabbed. The clinic also organised antibiotics for any child whose swab returned positive for streptococcus A, or ‘strep throat’, which can develop into rheumatic fever.

Rather than our society holding ourselves responsible for the social inequities that are causing rheumatic fever, we made children responsible for reporting their sore throats, and then let them return to the same cold, damp, crowded homes.

The government’s approach here reflects a more general problem we have in New Zealand policy. Successive neoliberal governments have viewed children through a primarily economic lens, where interventions are based on investment models aimed at minimising future cost to the state and maximising future productivity. Social justice takes second priority, and children’s own experiences and perspectives are largely invisible. As a society, too, we cordon children off as adults-in-waiting, imagining them as passive recipients of care, rather than whole people whose perspectives and activities matter.

We can see this neglect of children’s perspectives in our rheumatic fever policy. We ask parents to take children to the doctor for a child’s sore throat, without thinking about the step where a child has to know to recognise and report a sore throat. We predicate an entire health intervention on a subjective symptom, assuming firstly that children share our biomedical understanding of sore throat, and secondly, that asking them to monitor sore throats cannot be harmful.

Yet my research shows that both these assumptions are false. When I asked the 8- to 12 year-olds what a sore throat is, many gave unexpected answers. Children could describe sore throats as coughs and sneezes, allergies, or breathlessness, and some thought it was the same thing as colds and flu. This meant that many of the children visiting the clinic to be swabbed likely did not have what adults think of as ‘sore throat’ at all. Others were reporting sore throats caused by 'talking too much’ or ‘eating scratchy food’.

To make matters worse, these children were coming to the clinic with their sneezing, or their strained throat from shouting at lunchtime soccer, because they were scared. The rheumatic fever prevention campaign aimed to get parents to take children’s sore throats seriously, and it accomplished this by warning sore throats could lead to death.

“My brother nearly died” read the poster in the school clinic showing twin brothers of about the same age as the children I worked with.

“I didn’t want to die,” 9-year-old Amberlee told me in an interview. "Cause on the ad, him! He almost died!”

Many of these children could recite the advertisements verbatim. “It starts with sore throat then rheumatic fever then heart damage,” Ruby and her friends chanted. “And then dead,” one of them added.

It’s no wonder, then, that the children at the school I worked with visited the clinic a lot. They averaged seven visits to the clinic per year, and many children would’ve gone more often if they’d been allowed. Yet only about 9 percent of swabs came back positive for streptococcus A. My research found children were coming to the clinic frequently for a lot of reasons, but a major one was because they thought a sore throat meant they were a step away from death. Ten-year old Mila, for example, told me she came even when she didn’t feel a sore throat, because she was scared she might have one and not know it.

Because we were not thinking through policy from children’s perspectives, this intervention has wasted a lot of resources, scared a lot of children, and it hasn’t even worked. We need to do better for our kids.

Other countries such as Sweden centre children’s perspectives in their policy, and our own Children’s Commissioner, Andrew Becroft thinks we should be doing the same. A good place to start would be to simply consider implications for children of any policy, and to incorporate formal consideration of children’s perspectives into any policy decisions that may affect them.

It’s time to change the coal mine and remember that children are people, not afterthoughts. If we let children’s perspectives lead our policy, we might find our policy becomes a lot more effective.