Midnight runs to Middlemore Hospital’s emergency department were a feature of Jason Gurney’s life when he was growing up in South Auckland. As a 14-year-old, his father, Keg, had developed rheumatic fever, and by the time Gurney was a teenager, the damage done to Keg’s heart valves was putting his life in danger. Every other month there would be a panicked trip for medical help.
“I started asking myself why this was happening to my dad,” says Gurney (Ngāpuhi). “Why had he picked up this illness and not other children who were with him at the time?”
In a bid to answer those sorts of questions, Jason Gurney became an epidemiologist, involved in research looking at why some people are at higher risk of suffering the damage of rheumatic fever than others. Now an associate professor at the University of Otago, Gurney has also written a book, The Twisted Chain (Otago University Press, $35). “I started writing it almost as a way to better understand this disease,” he says.
Rheumatic fever is an autoimmune condition that results from a common bacteria known as Group A Streptococcus. Many children will carry this bug in their throats without ever knowing it. But for some, a Group A Strep infection leads to a painful sore throat, fever, swelling and aches in the joints. If left untreated, it causes inflammation in the heart, creating lasting damage.
In most developed countries, rheumatic fever is now considered a rare condition. In New Zealand, the problem persists, affecting mostly school-aged Māori and Pasifika children. To get a clearer picture of why some kids are more vulnerable, Gurney worked on the most comprehensive research ever done, the RF Risk Factors Study. The results have identified what many sufferers have in common. “Old, cold, mouldy housing,” he says. “If we are serious about preventing rheumatic fever and other Group A Strep infections, then we need to fix it.”
The study found that children living in severely crowded homes were almost four times more likely to develop rheumatic fever. Sharing a bed ups the risk, as does a lack of hot water for bathing. And renting a home, rather than owning one, increases the risk almost threefold.
Repeated episodes of rheumatic fever can lead to more severe heart damage, so regular preventive doses of penicillin are given to anyone after they have been ill with it once. These continue throughout childhood and sometimes beyond.
Last year, the government released a five-year Rheumatic Fever Roadmap, which identified the challenges of this, including difficulties tracking patients when they move around the country and the fact that, for the past 50 years or so, the penicillin has been delivered via an uncomfortable monthly intramuscular injection in the buttocks. “You can imagine it’s not a top priority for a teenager to adhere to monthly injections in their bum to prevent a condition that they used to have,” says Gurney.
Researchers are looking at alternatives, such as quarterly injections of penicillin in the fatty tissue, which would be easier to administrate. There are also efforts under way to develop a vaccine to prevent rheumatic fever. “The challenge is that we have more than 200 types of Group A Strep and any type can lead to rheumatic fever at any time, so a vaccine would need to be effective against all of them.”
While new vaccines are exciting, he believes we have to think about the battle against rheumatic fever as occurring on many fronts. Gurney is particularly encouraged by the results so far of the Healthy Homes Initiative, which has reduced hospitalisations and the severity of preventable health conditions such as rheumatic fever by helping high-risk families improve their living conditions.
“There are exciting pockets of things happening and a lot of people are fighting the good fight out in the community.”
He believes this is a battle that can be won. “It might not be tomorrow, it might not be in five years, but, if we take a long enough view, then we can do it.”
Not only are Māori and Pacific people more likely to develop rheumatic heart disease, but average life expectancy is 20 years shorter than for Europeans. Gurney believes his father is still going strong at 69 thanks largely to having the resources to pay for private medical care. “He’s probably between cardiac surgeries right now, which is a good place to be.”
