Would acute rheumatic fever (ARF) still exist in New Zealand if the people living and dying with rheumatic fever – a third world disease endemic in Māori and Pacific communities – were white?
The short answer is no, says Dr Anneka Anderson lead author of the just released report on Māori and Pacific Whānau Experiences of Recurrent Rheumatic Fever and Unexpected Rheumatic Heart Disease in New Zealand.
She says the research shows that blatant racism – such as ARF patients being called ‘coconuts’ by health care workers and being treated roughly in hospitals – coupled with systemic racism in the form of unaffordable and poorly insulated homes, are a big part of why ARF still exists in New Zealand.
“I don’t believe we would be where we are now if it was a whole lot of white children infected.”
People in the study complained of problems in the health system including racism. As well as name calling, participants spoke of a lack of cultural safety, including touching Māori on the head, and a lack of privacy when changing clothes.
Some even said they preferred to inject their own doses of Bicillin, a long-acting antibiotic commonly used for the secondary prevention of rheumatic fever, rather than go through the pain of receiving it from a health professional.
The Ministry of Health funded report saw interviews conducted with a total of 113 people from 38 whānau and RF health care providers from seven different North Island District Health Boards. The researchers from Auckland University’s Te Kupenga Hauora Māori (Department of Māori Health), used a qualitative kaupapa Māori research framework, and Pacific talanga and kalala research methods.
What we found wasn’t good, says Dr Anderson.
“When looking at whānau experiences of the healthcare system, from the onset of symptoms until their eventual diagnoses, systemic failures became apparent, including the inability of many health care services to meet the complex living contexts of whānau, which contributed to the development of recurrent RF, recurrent hospitalisations for RF and RHD.
“Blame is all too often diverted by racist thinking such as ‘Maori and Pacific people are too busy smoking and drinking to look after their kids’ or by the equally untrue urban myth that Māori and Pacifc people are more genetically susceptible to RF.
“In reality research shows the small proportion of genetic susceptibility is spread across populations rather than within them. It is only relatively recently that the number of New Zealand Europeans getting ARF decreased.
“Common denominators contributing to the high rates of infection are poor housing and poverty. The bacteria that cause strep throats that can lead to RF are airborne often spread by coughing and sneezing. So sleeping at close proximity increases the risk of spreading strep throats and getting RF. One family in the study with a child with RF could only afford to heat one room in an uninsulated house so everyone slept in the same room at night. Another family was homeless and living in car with a six week old baby and older child with rheumatic fever. “
Rheumatic fever develops from strep throat infections. Once someone has rheumatic fever they must have Bicillin injections into their buttocks every 28 days for at least ten years to prevent them getting sick again. ARF results in joint pain but most significantly and seriously it can led to rheumatic heart disease (RHD) and damage valves in the heart.
RHD is a chronic illness and can lead to the sufferer having a shortened life expectancy and the need for ongoing coronary care and heart surgery.
Despite the efforts of various governments to deal with ARF, the inequities in rates of the disease are yet to improve . From 1996 to 2005, RF rates significantly increased for Māori and Pacific children, but decreased among New Zealand European children. Between 2005 and 2010, the rate of RF doubled from 1.9 reported cases per 100,000 to 3.8 per 100,000. Rates among Māori and Pacific children between 5 and 14 years of age are disproportionately high. Pacific children are over 50 times and Māori children over 30 times more likely to get ARF than New Zealand European children.
What was it like researching a preventable disease which New Zealanders are dying from in 2018?
“I felt privileged to be trusted with these narratives, but I found it extremely difficult at times hearing mothers worrying about their children potentially dying early or their children having to have heart transplants while they were also just trying to make ends meet.
“I found it confronting in a way – it kept it real. It is quite easy to do armchair research just looking at the statistics when you are not face to face with people. But when you are invited into their homes and see the complexities of their lives it can be hard talking to mothers as a mother myself.”
The report shows that too often general practitioners are not swabbing the throats of Māori and Pacific children as is recommended by the New Zealand Sore Throat Guidelines, she says.
“One mother told me “I had to get aggressive with these fellas”. She already had a child with rheumatic fever at home and when the GP said her son just had the flu, to go home and give him Pamol, she said “he has pus on his tonsils so you need to swab his throat.”
The woman went on to tell Dr Anderson that she knew it was strep throat that could lead to rheumatic fever and felt bad for those people “who couldn’t advocate for themselves”.
This also reflects the view of a number of participants that doctors are still regarded as the experts and people don’t always feel comfortable disagreeing with a doctor.
“This is not to pick on our primary health care professionals who are doing a lot of great work but we need to see what can be changed within the system to make it easier for GPs to follow our sore throats guidelines.”
As well, research is generally conducted from a health services perspective, says Dr Anderson.
“But we need to look at things from the people’s perspective and look at what is the most user friendly approach. When it comes to children and teens affected you need to look at the whānau perspective because children can’t get themselves to the hospital for treatment.
Those involved wanted to share their experiences to improve services for themselves, their own tamariki and for others, says Dr Anderson.
“The largest whānau we talked to had eight members. They found the interview really powerful as it was the first time they got together and talked about their different experiences. One person said it was like putting the pieces of a puzzle together hearing what her partner and sister and cousins had to say about dealing with the same child with RF but in different areas.”
Barriers & recommendations
Dr Anderson said financial pressures associated with the complex living contexts of many whānau created barriers to accessing both primary and secondary health care services for their RRF and RHD. Common barriers were a lack of transport and meeting the costs of health care and medical prescription fees.
“Some DHB’s cover the cost of the injections others do not, and when you cannot afford to buy food to eat, and are looking for somewhere to live, paying for medicine is not always possible.”
The report lists 11 recommendations to improve the current situation including addressing racism, cultural safety and housing issues. The report also recommends improvements to health literacy of patients to reduce reoccurring cases of RF, and improved health promotion messages.
“In terms of messaging, very few whānau understood what the Bicillin injections once a month were for. Especially the kids, they knew they had to get the injections to stop the ‘bugs’ but no more than that.
Older teens we talked to said if they had understood at the time how important the injections were (for their long term health) they would have been more inclined to continue having them. The research shows that teens need different communication as it is a complex time of their lives and playing rugby or deciding what to wear to the ball are for example are considered more important.”
Health Minister Dr David Clark responded to the report today by saying:
“Tackling inequality in the health system is one of my highest priorities as Health Minister, so I am concerned by this report.
“It’s unacceptable that Māori and Pacific children and young people still have high rates of rheumatic fever in New Zealand and improving this continues to be a focus for District Health Boards with a high incidence of the disease.
“The Ministry of Health is working with the sector to identify what else can be done, and will advise me on the way forward once this work is complete.
“It’s clear that poor housing is a contributor to high rates of rheumatic fever. Housing is a leading priority for this Government and we’re working to make healthy affordable homes more accessible to those who need them most.”