New Zealand is one of the only developed countries still battling rheumatic fever. Now Cure Kids is giving its largest ever amount of funding to six studies into the childhood illness.

Former Auckland Blues player Matt Johnson apologised for the loud tick coming from his chest as he stood up to tell his story of rheumatic fever at Auckland University on Monday. He has a loud mechanical valve in his chest, the result of three open heart surgeries due to a condition called rheumatic heart disease. 

The first time he went under the knife, Johnson was only 13 years old. Surgeons replaced his aortic valve after he contracted rheumatic heart disease, a result of rheumatic fever, and he was told his rugby dreams were over.

Years later, despite initially refusing to give up on his professional rugby-playing career, about 12 months after he started playing for the Blues, Johnson was forced to. A minor heart attack meant in June this year he was sent for his third heart surgery, and after complications during it, he was placed in an induced coma for six days. 

“My artery was blocked 80% for about two years,” he explains. The health effects he’s had since he was 13 have been tough on Johnson’s family, and he describes waking from his coma and hearing from his fiancée, scared she would be planning his funeral instead of their wedding.

“I woke up and they had to put in a mechanical valve because they thought I wouldn’t survive if I went under the knife again… Waking up to that and hearing the news, [my family] was worried about telling me that I couldn’t play rugby any more but I was just grateful that I was still there, that I was still alive.”

A recent Cure Kids announcement of $3m funding to six research groups looking into the various aspects of rheumatic fever treatment means the illness is once again in the spotlight. At an event at the University of Auckland on Monday, Professor Michael Baker said it’s shameful New Zealand still has such high rates of rheumatic fever and rheumatic heart disease.

“In many ways it’s shocking that we’re having this meeting in 2020. New Zealand and Australia are the only two high-income countries where this is still a problem.”

Rheumatic fever is an illness that starts off life as a common strep A throat or skin infection. From this point, some children develop rheumatic fever as their bodies react strangely to fight off the strep virus. If rheumatic fever isn’t treated correctly, rheumatic heart disease can develop in some people.

Two demographics, Māori and Pacific youth, make up almost all cases of rheumatic fever in New Zealand. Māori are 50 times more likely than non-Māori to get rheumatic fever and Pasifika 120 times more likely. According to the Ministry of Health, “It is highly likely that a combination of crowded housing conditions and socio-economic deprivation, barriers to primary healthcare access and the subsequent higher burden of untreated strep sore throat infections are important factors leading to higher rates of rheumatic fever among Māori and Pacific people.”

One of the studies being funded through the Cure Kids initiative is headed by Dr Anneka Anderson and Dr Rachel Brown, who hope researching the creation of a patient-centred model of care for Māori and Pacific rangatahi will help those with rheumatic fever receive their monthly injections of bicillin, a known preventative of rheumatic heart disease.

“When we look at New Zealand society and the healthcare system, we’re seeing a society that privileges non-Māori and privileges non-Pacific. That’s a huge driver for us as researchers to ask ‘how do we flip that and prioritise Māori and Pacific voices and experiences to change things as they are at the moment?’ says Anderson. 

She says if the illness was one experienced predominantly by Pākehā children, action would have been taken long ago to stamp it out. 

“The trouble is when you’ve got Māori and Pacific children there are so many individualised behaviours that are blamed… [Māori and Pacific parents] are taking their children to the doctor but often they’re not getting the antibiotics prescribed or not getting the throat swabbed, or they’re asymptomatic and they don’t have a sore throat. We have this discourse of blame, particularly for mothers and whānau, that is ignoring the more structural determinants of causation, and then when we see it we go, ‘well that’s the irresponsible parents’.”

Anderson and Brown’s research will be led by patients and their whānau and use mātauranga Māori and Pacific research methodologies to assess the best ways, culturally and scientifically, to ensure those with rheumatic fever are getting the best care possible.

“By making this a culturally responsive and equity-focused project we will also hopefully plug the gaps for racism, re-privilege Māori and Pacific and address all these access barriers,” Anderson explains.

The five other funded studies cover everything from vaccines to new ways of delivering the penicillin-based treatment. Auckland University’s Dr Jacelyn Loh is leading a team to develop a vaccine that has broad coverage against the strep A bug, the root cause of rheumatic fever.

Auckland University’s associate professor Nigel Wilson is looking into the use of the now widely known drug hydroxychloroquine in the prevention of rheumatic heart disease, after seeing positive signs in two patients.

And the University of Otago’s Dr Julie Bennet is researching ways of administering the penicillin drug needed to prevent RF relapses that will be more effective, long lasting and less painful than the deep muscle injections currently used.

Director of research at Cure Kids, Tara Satyanand, says the organisation has been committed to addressing rheumatic fever and rheumatic heart disease for years, but this is the largest amount of money they’ve committed to the cause. It’s the largest amount of money they’ve ever committed to one cause in the charity’s 50 years.

“The government has to make evidence-based decisions, they have a huge number of priorities, and I get it, it’s really hard – but I also think there’s a benefit in just saying ‘we’re going to have a push, devote some time into this at the moment’. That’s what Cure Kids is doing.”

Cure Kids is a charity that supports New Zealand researchers focusing on childhood illness. The organisation provides the second-largest amount of funding for child health research in New Zealand, behind the government. 

In its election campaign, the Labour Party promised children were at the focus of its healthy homes policies, which the Labour Party website says are intended to drive down the rate of rheumatic fever in New Zealand. They pledged an extra $39m for insulation, heaters and bedding to help reduce the rates of children contracting rheumatic fever.

Satyanand says rheumatic fever and rheumatic heart disease have been relatively misunderstood because of all the minor symptoms that lead to it developing, but she’s determined that Cure Kids’ research funding will help further the cause of eradicating it from New Zealand.

“It’s not a raging illness that’s super obvious; like with measles, you’re covered in spots. It is so insidious and pervasive in our society and we have to call it out, then we can stamp it out… It’s a small amount of money in the scheme of things but if we can raise some awareness, that will help.”