A deadly disease that cut off the career of one of New Zealand's most promising rugby players is too often "swept under the carpet", a child health charity executive believes.
Cure Kids CEO Frances Benge says while Kiwis responded incredibly to the call to action over Covid in the last 12 months, the same cannot be said for rheumatic heart disease (RHD), a condition which causes damage to valves in the heart and every year claims the lives of about 125 New Zealanders.
"For sufferers it can be a lethal disease; for many it definitely shortens lives," she says. "Tragically, it is a health problem driven by inequality and we don't yet have a vaccine or effective treatment for it; too often it seems it is just swept under the carpet."
Her comments come as Cure Kids, New Zealand's largest child health charity, has announced it is providing $3 million over the next three years to six research projects aimed at eradicating the disease.
Benge says former Blues super rugby and Melbourne Storm NRL player Matt Johnson - who contracted rheumatic fever at 13 - is one who has suffered terribly from the disease. Poised to go places in New Zealand rugby, the midfield back was forced to retire last year at just 26 after undergoing three open heart surgeries.
"He had a stellar career ahead of him, but the disease ruined that," Benge says.
After stints playing for the Melbourne Storm and rugby in Leeds, Johnson, who features in a Cure Kids podcast here , returned to New Zealand where he played for both Southland and Northland and, in 2018, broke into the Blues super rugby squad. But complications from earlier surgeries forced him into retirement.
"Everyone talks about how I am feeling not playing anymore and having to retire at 26," he said in an interview with the NZ Herald last year. "But I'm not that fussed to be honest, I'm just happy to be alive."
Rheumatic fever has been a notifiable disease in New Zealand since 1986 and, according to the Ministry of Health, has a much higher incidence here than in comparable countries such as those in North America and the UK.
Every year up to 800 people are admitted to hospital with underlying rheumatic heart disease (according to a 2019 report on Radio New Zealand). Up to 80 per cent of cases of rheumatic fever occur in young people under 15 with Pacific and Maori people being the hardest hit.
Benge says while the number of Pakeha New Zealanders who contact rheumatic fever is just one in every 10,000, the figure for Maori is 50 for every 10,000 people and 120 out of every 10,000 in Pacific communities.
"Rheumatic fever disproportionately affects Maori and Pasifika who make up 95 per cent of new cases nationally," she says. "Several of Cure Kids' research projects are specifically designed to address these inequalities.
"We believe in a developed nation like New Zealand, this condition, which is preventable, simply should not exist. More research is needed on tools to help eliminate it from our country."
Benge says the Cure Kids funding will go to six research projects each with different but complementary objectives including research to design preventative interventions, improve access to care, to develop a diagnostic test, effective treatments and a vaccine.
Rheumatic fever is the body's auto-immune response to an infection of the skin or throat with Group A Streptococcus (for example strep throat) while RHD refers to the damage which this inflammation causes to the heart valves.
Previous research conducted by Professor Michael Baker, an epidemiologist at the University of Otago who has become familiar to New Zealanders in the last year with his comments around the Covid response, identified housing conditions - household crowding in particular - as a major contributing factor for RHD.
Damp and mould in houses and insufficient hot water for washing and cooking were other factors identified by Baker.
But Benge says even if we were able to provide these conditions for every family in New Zealand, much is still unknown about the disease, and how to treat and prevent it. That's why Cure Kids is responding to the need for more research.
Dr Nikki Moreland, senior lecturer in immunology and a biomedical scientist at the University of Auckland is focusing her work on identifying biomarkers for rheumatic fever and is one researcher funded by Cure Kids.
"There is no single specific test for the diagnosis of rheumatic fever, so a quick diagnosis is not always possible," Moreland says. "So identifying unique biomarkers is an important first step to not only developing an accurate diagnosis but to speeding it up."
Other research projects that will receive Cure Kids funding are:
- Design of a vaccine for Group A Streptococcus by Dr Jacelyn Loh at the University of Auckland.
- A trial of a high-dose, longer-lasting skin implant to prevent RHD by Dr Julie Bennett at the University of Otago, Wellington.
- A pilot study of a patient-centred model of care to improve services for Maori and Pasifika by Dr Anneka Anderson of the University of Auckland.
- A search for different chemical forms of penicillin as options for preventing RHD by Dr Dianne Sika-Paotonu at the University of Otago, Dunedin.
- A study into the safety and efficacy of an anti-inflammatory medication, hydroxychloroquine, for preventing damage to heart valves by Associate Professor Nigel Wilson at the University of Auckland.
Cure Kids has developed a podcast featuring Professor Baker, Matt Johnson and all six researchers.. Partners Life, a proud partner of the charity, funded the production of the rheumatic heart disease podcast to help Cure Kids spread this urgent message.
See below to listen to the podcast and to make a donation please go to curekids.org.nz