Leading rheumatic fever advocates implore Government to act on promise to establish national register to manage patient care

Pū Manawa Aotearoa, a recently formed network of health practitioners, researchers, and non-government organisations, is calling on the Government for urgent action on rheumatic fever in New Zealand. This country stands out from most other high-income nations – where rheumatic fever and rheumatic heart disease are now largely eliminated – with health data proving disease levels remain stubbornly high.

The experts who have formed the Pū Manawa network, supported by organisations including the National Hauora Coalition, the Heart Foundation, and Cure Kids, have published an open letter and call to action in the NZ Medical Journal, asking the Government to fund a national register to help manage cases of rheumatic fever and rheumatic heart disease – a Labour Party pledge made before the 2020 general election.

The Government has not yet delivered on its promise to set up the national register, a commitment reinforced in October 2020 by Prime Minister Ardern.

“A register of New Zealanders living with these conditions would allow the health workforce to improve care for patients and support people to stick with painful monthly injections over a decade to prevent further damage to their hearts,” says Pū Manawa Aotearoa Co-Chair, Dr Anneka Anderson, a researcher at the University of Auckland.

Professor Michael Baker adds that a national register would provide data to inform public-health programmes to prevent recurrences of rheumatic fever and reduce deaths from rheumatic heart disease, which disproportionally affect Māori and Pasifika peoples.

“The costs associated with increasing hospitalisations, health care, and heart surgery for rheumatic heart disease justify investment in evidence-based measures to prevent and treat the disease – a register of everyone living with this condition is imperative.”

Pasifika children have the highest rates of rheumatic fever in New Zealand, and some of the highest rates in the world. The disparity is so great that between 2000 and 2018, 80 times as many Pasifika children were hospitalised for acute rheumatic fever as children classed as “NZ European or other ethnicity”.¹ Approximately 93% of initial cases of acute rheumatic fever in people younger than 30 years were in either Māori or Pasifika peoples.¹

“This unacceptable level of inequity means that while New Zealand Europeans diagnosed with rheumatic heart disease die at an average age of 80 years, Pasifika sufferers die at 55 years of age and Māori at 59 years, on average,” says Dr Julie Bennett, a researcher at the University of Otago.

Research into the complex causes of rheumatic heart disease, and the reasons for inequity in the burden of disease, is also urgently needed. Other challenges include finding new ways to improve care for those who carry the burden, and developing tools such as diagnostic tests and vaccines which might eventually end this disease.

Pū Manawa is asking the government to deliver on its pre-election promise to fund a national register for patients, and to support development of a national prevention and control strategy.² The Network has published a letter and call to action in this week’s issue of the NZ Medical Journal.²

About Pū Manawa ​– Rheumatic Fever Network Aotearoa New Zealand

Pū Manawa was established to coordinate efforts to research, prevent and improve the management of Rheumatic Fever and Rheumatic Heart Disease. The group’s expert members work in a range of settings including clinical practice, academia, community, and strategic roles across a range of different organisations such as Primary Health Organisations (PHOs), District Health Boards (DHBs), and Universities.

About rheumatic fever and rheumatic heart disease

Rheumatic fever is an auto-immune response to bacterial infection with group A streptococcus (GAS). In more than half of cases, inflammation of the heart valves progresses to rheumatic heart disease (RHD), a chronic condition which increases chances of heart failure, stroke, and early death. The best available treatment is intramuscular injections of penicillin every 28 days for at least 10 years.

Founding Members of Pū Manawa Aotearoa

Anneka Anderson (co-chair Māori), University of Auckland, National Hauora Coalition

Malakai Ofanoa (co-chair Pasifika), University of Auckland

Alison Leversha, Auckland DHB

Dianne Sika-Paotonu, University of Otago

Donna Kieler, National Hauora Coalition

John Malcolm, Bay of Plenty DHB

Julie Bennett, University of Otago, Wellington

Kyle Eggleton, University of Auckland

Liz Tiumalu, South Seas Healthcare

Matire Harwood, University of Auckland

Michael Baker, University of Otago, Wellington

Neil Poskitt, Te Ngae Medical Centre

Nigel Wilson, Starship Child Health

Nikki Moreland, University of Auckland

Philippa Anderson, Counties Manukau DHB

Rachel Brown, National Hauora Coalition

Rachel Webb, Counties Manukau DHB, Starship Children’s Health, University of Auckland

Rawiri McKree Jansen, National Hauora Coalition

Shannon Leilua, patient advocate

Sara Noonan, RHD Australia

Supporting organisations

Heart Foundation

Cure Kids

National Hauora Coalition

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