The impact of racism on rheumatic fever rates

February 1, 2021

Institutional racism and unconscious bias play a significant role in the high rates of rheumatic fever among Māori.

Rheumatic fever (RF) is a disease of poverty. It is rarely seen in most developed countries but is prevalent in Māori and Pacific people in Aotearoa/New Zealand.1 It is preventable and treatable if early diagnosis and prompt treatment are provided. Without treatment, it can permanently damage the heart valves, leading to rheumatic heart disease (RHD). A persistent threat of RF and RHD to Māori and Pacific people reflects the social deprivation and health disparities in Aotearoa/New Zealand.

RF is an inflammatory disorder due to an autoimmune response triggered by group A beta-hemolytic streptococcus (GAS) infection, which is transmitted by airborne droplets and causes pharyngitis. A sore throat is the early symptom of GAS pharyngitis and the onset of RF often occurs two to four weeks after a GAS throat infection.2 Early and active intervention of GAS pharyngitis, with throat swabbing and appropriate antibiotic treatment, is fundamental to the primary prevention of RF.3 RF can lead to irreparable complications, such as RHD.4

RF is almost eliminated in developed countries because living conditions and health services have significantly improved.5 However, RF remains a major public health problem in developing countries6 and is endemic here.7

Life expectancy shortened

Over the past decades, 95 per cent of the 150-200 patients with RF each year have been Māori and Pacific people.8 There are 600-800 hospital admissions for RHD per year. Māori and Pacific people have five to 10 times higher mortality from RHD than non-Māori/non-Pacific. There are 150-200 premature deaths from RHD per year in New Zealand and life expectancy in people with RF is shortened by about 15 years.9

The geographical distribution of RF is uneven. An epidemiological study in 2014-2015 revealed a national RF incidence rate of 2.6 per 100,000.10 RF rates were highest in Pacific people (77.3 per 100,000), followed by Māori (31.7 per 100,000), and lowest in Pākehā (0.5 per 100,000).10

Nearly half of the cases with first- episode RF were from the upper North Island district health boards (DHBs), with 14.9 per 100,000 in Tairawhiti DHB, followed by 7.8 per 100,000 in Northland DHB, and 7.1 per 100,000 in Counties Manukau DHB.10

The burden of RF and RHD in Tai Tokerau/Northland Māori is of great concern. One study revealed that in Tai Tokerau from 2002-2011, 95 per cent of patients with RF were Māori children between five and 14, with rates of 78 per 100,000 in Māori, compared to 4.6 per 100,000 in non-Māori.11 These are almost double the rates of other epidemics in this country.12

Although RF has been regarded as a disease of childhood, 10 RF patients aged over 20 were reported during 2012-2017 in Tai Tokerau, indicating a possible delay in diagnosis of acute RF.13

RF was a threat to the entire population in the 1920s, with rates of 60-80 per 100,000 in urban, school-aged Pākehā children.14 However, since the 1960s, rapid urbanisation of Māori and socioeconomic reforms which led to the deterioration of Māori socioeconomic status, have contributed to household crowding and poverty, and dramatically increased RF rates in Māori children.15, 16 Distribution of the Māori population changed greatly following World War II. In 1945, 26 per cent of the Māori population lived in urban areas. This had increased to 80 per cent by 1986 and 84 per cent by 2013.17

Since then, both Māori and Pacific people have experienced high RF rates, but Pākehā rates have remained low.8

There is no evidence to support a genetic link to RF in Māori, as Pākehā once experienced high rates also.8 Research suggests RF is closely associated with the socioeconomic determinants of health.

Studies have shown that 90 per cent of patients with RF and RHD live in areas of high deprivation.18 Studies have also found that whānau have had difficulties accessing health services for RF. Barriers included inability to get appointments with GPs or to pay for them, and/or lack of transport.19 Inflexible delivery and a lack of appropriate follow–up care are also barriers for teenagers who leave school or lose contact with services.19

People living in the most deprived regions are 30 times more likely to be diagnosed with RF than those living in the least-deprived regions. However, both Māori and Pacific people are still more likely to suffer from RF, no matter where they live,20 suggesting factors other than deprivation are responsible for health disparities.

Racism and discrimination are major reasons for health disparities in RF for Māori and Pacific people.21, 22 A lack of cultural safety reinforces whānau fears, vulnerability and concerns about being disrespected. Whānau can feel ignored and receive inappropriate management for RF.19 Such negative clinical experiences in primary care services can lead to mistrust of health professionals.

Before colonisation, Aotearoa/New Zealand was almost free of epidemic diseases. European settlers brought with them new diseases, such as measles, influenza, RF, and venereal diseases, which threatened Māori health and ravaged Māori communities.23, 24 Māori had no immunity against these infectious diseases and Māori traditional medicine was not effective for their treatment.

Furthermore, legislation and land confiscation after the land wars resulted in rapid loss of Māori land that led to impoverishment. Māori land ownership dropped to six per cent of the total land area of Aotearoa/New Zealand by 1995.25 The consequent malnutrition and poor housing contributed to increased mortality. The Māori population had halved to approximately 42,000 by 1895.26 Although the Māori population has gradually recovered over time, the average life expectancy at birth in the 2010s was still seven to eight years shorter for Māori than non-Māori.27

Understanding New Zealand colonial history is fundamental to understanding Māori health disparities. Māori disconnection from their land, and the loss of language and cultural identity for many, have meant their economic base and social connectedness have been disrupted.24

Government policies of assimilation and integration further suppressed Māori language and culture. In the ’60s, Māori were forced to move to urban areas looking for jobs and education.26 Urbanisation eroded Māori tribal lifestyle and culture and this further contributed to a loss of identity.

In the ’80s and ’90s, during major neoliberal social and economic reforms, income inequality increased dramatically, as did health inequalities for Māori and Pacific people. Māori and Pacific children were 12-25 times more likely to be living in crowded households,28 with Māori home ownership dropping by more than 25 per cent in Tai Tokerau between 1986 and 2013.29 Consequently, Māori are more likely to live in poorly-insulated, overcrowded private rental accommodation.

Rheumatic fever is a complex disease and will not be eliminated until poverty, household crowding, racism and barriers to accessing health services are addressed.

A 2019 literature review on risk factors for RF in New Zealand evaluated the link between RF and a range of possible modifiable risk factors.30 It also examined the potential protective effect of easy access to primary health care for RF.30 However, it did not consider the contribution of racism and discrimination to RF health disparities.

For many Māori, western health services are not considered conducive to their health and wellbeing and when they engage with health services, many have experienced racism and discrimination.31 Māori receive lower levels and poorer quality of health care compared to Pākehā.32

Institutional racism is a violation of Te Tiriti o Waitangi.33 Unconscious bias is common, including among health professionals.33 Racism and discrimination are at the root of health inequalities in Aotearoa/New Zealand. Health disparities need to be addressed, not only through health policies and strategies but also through changes in the health-care system and in the attitudes of some of those who work within it.

To date, no government has created a specific policy which targets RF. However, in 2011 the Government initiated the Rheumatic Fever Prevention Programme (RFPP), with three main strategies to reduce RF in 11 high-risk regions, including Tai Tokerau.34 A target was to decrease first-episode RF hospitalisation rates by two-thirds by 2017 (from 4.0 per 100,000 in 2012 to 1.4 per 100,000 by 2017). The Ministry of Health-led programme focused on three strategies: RF advocacy, education, and awareness; school-based sore throat swabbing and expansion of sore throat clinics; and improvement in household living standards.34

In spite of government funding and public health initiatives, one study indicated that, between 2012-2017, RF rates of 64.5 per 100,000 remained for Northland Māori children aged 5-14 – a one fifth decrease compared to 2002-2011 rates.13 The incidence of RF in Northland DHB has also only reduced slightly from 7.7/100,000/year to 7/100,000/year. The high rates of RF among Māori have remained at the same level as rates in developing countries.13

Current strategies to reduce RF emphasise the primary prevention of acute RF, with less focus on the secondary prevention of RHD. One study found that systematic screening with echocardiography had approximately 10 times higher rate of identifying RHD.35 Echocardiography to screen for RHD provides the opportunity to initiate secondary prevention with antibiotic prophylaxis. Using portable echocardiography, researchers found one to two per cent of children in high-risk RF regions had undetected RHD.12 Thus combining primary prevention and mobile echocardiographic examination to identify unknown RHD in the high-incidence RF populations is recommended.

Conclusion

The persistence of high rates of RF among Māori and Pacific people implies a failure of the health-care system in preventing RF. It also indicates inequality in the application of human rights and social justice. Colonisation has had a long-term detrimental impact on Māori land, culture, health and wellbeing. Deep-rooted and/or unconscious racism is still a challenge for health equity. RF is a complex disease and will not be eliminated until poverty, household crowding, racism and barriers to accessing health services are addressed.

This article has been reviewed by educators Zoe Tipa, from the Centre for Interdisciplinary Trauma Research at the Auckland University of Technology, and Johanna Rhodes, head of the School of Nursing, Southern Institute of Technology, and the co-editors.

Men-Fang Shiao, RN, BN, will begin a nurse-entry-to-specialist practice programme at Tumanako, the mental health unit at Whangarei Base Hospital, in April. This article has been developed from an assignment he wrote as a third-year student at NorthTec.

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