Leading Rheumatic Fever Advocates Implore Government To Act On Promise To Establish National Register For 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

1. Bennett J, et al. Rising Ethnic Inequalities in Acute Rheumatic Fever and Rheumatic Heart Disease, New Zealand, 2000-2018. Emerg Infect Dis 2021;27:36-46 2 Bennett J, et al. Call to action on rheumatic Heart Disease. NZ Med J. 2021; 135 (1534).

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