Kuli Katoa has been trying to get a larger house for four years but claims Housing NZ can't help. Now his 11-year-old son, Tristan, has paid the price. Tristan has rheumatic heart disease.
Acute rheumatic fever is a deadly Third World disease that stems from Group A Streptococcus bacteria, or a strep throat infection. It usually begins with a sore throat and, if untreated, will progress to the joints, brain, skin and heart in weeks.
Those most severely affected end up with permanently damaged heart valves, and significantly shorter lives.
Tristan is one of about 170 people who will be hospitalised with acute rheumatic fever this year, on current projections. Although he will be forever haunted by the disease, he is considered lucky as rheumatic heart disease kills up to 200 people a year.
New Zealand has some of the highest rates of acute rheumatic fever (17 cases per 100,000 children, and 81 per 100,000 Pacific children) behind Africa and Asia, costing the country $12 million a year. The incidence of rheumatic fever here is 14 times the OECD average.
Medical experts call it the "silent killer" because people can live with the disease for years without knowing. Only when their heart starts failing as an adult are they diagnosed with rheumatic fever. It is also known as the "poverty disease" as the most susceptible live in overcrowded houses or poorer communities.
Maori and Pacific children are 20 to 50 times more likely to fall ill with rheumatic fever, respectively. Ministry of Health figures reveal 537 Maori and 397 Pacific people were affected in the past six years, compared to 107 Europeans. The disease is most widespread in poorer communities, but not limited to them.
Last month, the Herald on Sunday reported the case of 8-year-old Kyuss Burnell, who underwent open-heart surgery after his undiagnosed strep throat turned into rheumatic heart disease. Burnell goes to a decile 10 school in the affluent Auckland suburb of Mission Bay.
This week, the Government allocated a further $21.3 million to combat rheumatic fever over the next four years, on top of $24m already invested. It includes $11.25m for sore throat drop-in clinics in Auckland and Porirua, $4.72m for an awareness campaign, $3.75m for an Auckland-wide healthy homes referral and advice service and $1.6m for vaccine research.
The funding comes after a Ministry of Health-commissioned report highlighted flaws in the prevention programme launched last year.
In 2011, the Government set a target to reduce the acute rheumatic fever incidence by two thirds to 1.4 cases per 100,000 people, by June 2017.
Auckland and Counties Manukau District Health Boards have reacted this year by expanding throat-swabbing centres in schools. Auckland District Health Board runs a free throat-swabbing clinic in two central schools but will extend services to 16 schools in August. Throat-swabbing is used to detect streptococcus before it develops into rheumatic fever.
Mana Kidz, a health service funded by Counties Manukau DHB, will increase its swabbing clinics this month from 34 to 53 across schools in Otara, Mangere and Manurewa. Wellington regional public health has also expanded its clinics.
Health Minister Tony Ryall says the additional money will increase access to throat-swabbing centres, enhance community awareness and assist those who live in poor conditions.
Labour Health spokeswoman Annette King slammed the campaign saying the money would be better spent on improving access to affordable primary health care where other illnesses of poverty, such as respiratory diseases and skin infections, can be detected.
National says Labour didn't do anything while it was in government; Labour says National isn't doing enough now.
While politicians bicker, the Herald on Sunday spoke to those on the frontline about what is being done to combat the silent killer.
It's 1973, and children in the small poverty-ridden town of Wairoa are hospitalised with rheumatic fever at a rate five times higher than the rest of the nation.
A study of the high rate of sick children in this corner of Hawke's Bay makes shocking reading: more than 232 people per 100,000 are hospitalised each year compared to the national average of 43 per 100,000. Outrage erupts and, in 1984, rheumatic fever is made a notifiable disease.
In the 1980s, authorities and medics focused on treatment and registers of medication, resulting in a decline in rheumatic fever for Pakeha, but not Maori and Pacific people. The rate for Maori and Pacific increased, and is still increasing.
New Zealand dragged its feet while other developed countries celebrated eradicating the disease.
In 2002, a small Northland community made a breakthrough. Whangaroa, 36km north of Kerikeri, was the first to work with the public health unit to set up a school-based throat-swabbing centre. Eight days after the intervention, the town, which held one of the highest rates of rheumatic fever, was free of it.
For six years the incidence rate, especially in Auckland and Northland, has continued to rise alarmingly. This week at Dawson Primary School, in the South Auckland suburb of Otara, 400 pupils scramble into their classrooms. Before learning begins the teacher asks: "Who has a sore throat today? Who has sores on their skin?"
The teacher scribbles notes for the school nurse and some children are tested for strep throat and skin infections.
The results are returned within 24 hours and, if a child tests positive, he or she is given free medication immediately.
Glen Innes Primary School, which has had one case of rheumatic fever this year, will begin throat-swabbing in August. Principal Jonathan Hendricks says parents are unaware sore throats can lead to heart damage.
Heart Foundation medical director Norman Sharpe says he is ashamed and embarrassed by our high incidence of acute rheumatic fever. He says we, as a nation, should all be ashamed.
"I regard rheumatic fever as an indicator of child poverty, ill health and how we value our children."
The steady tone of his voice rises as he explains how long-running advocacy by several health agencies has finally convinced the Government to invest in prevention.
"Thanks to Tariana Turia about three years ago, we saw the Government becoming committed to rheumatic fever prevention in the form of a $24m sore throat management programme," Sharpe said.
"For the first time, the Government and ministry realised this was a problem and realised it was more than rheumatic fever, that it travels with other groups of diseases and is indicative of child poverty and ill health.
"We said from the outset it's not sufficient unless we looked upstream to the causal factors and broaden the programme to other areas such as housing and education, as well as health."
He says the $3.7m dedicated to improve Auckland homes is a start, but not enough.
"We are really short on social housing - homes that are insulated, warm and not crowded."
Last winter, the Herald on Sunday launched a campaign to ensure all rental homes are fully insulated - a campaign that was backed by Prime Minister John Key. This week in the Budget, Housing Minister Nick Smith announced $100 million would be invested over three years to improve insulation in homes.
The Government will develop a housing warrant of fitness and trial it in 69,000 Housing NZ properties.
Sharpe says the new Government investment and initiatives have increased hope.
Starship Hospital paediatric heart specialist Dr Nigel Wilson has been helping mend broken hearts for 34 years. He says it is frustrating to watch so many children suffer from a preventable disease.
"Sore throats really do matter. It is very frustrating."
Though he is ecstatic about the Government's latest (in his view, long overdue) prevention programme, he believes a vaccine is the ultimate answer. This year, Kiwi and Australian scientists united to work on a vaccine against rheumatic fever. If successful, it will be the first in the world.
Wilson says the $1.6m allocated for research shows our Government is committed to primary prevention. "If we had a vaccine, that will be the true primary prevention. In the long term, a vaccine must be the ultimate way to go."
Last month, John Key asked Microsoft co-founder Bill Gates about whether his philanthropic foundation would join the search for a vaccine for rheumatic fever. A spokeswoman for Key says he has followed up on it and made suggestions how the Gates Foundation might help.
Tristan lifts up his top and shows a meaty 15cm scar that looks like an earthworm sitting on his sternum. It is the lifesaving mark that reminds him of the day his heart began to fail.
Tristan was playing with his brothers when he keeled over struggling to breathe. "I just started whacking my chest and I couldn't lie down," Tristan says.
A rash covered his feet, arms and face in tiny red pimples and exhausted, he clung to his father as he rushed him to the doctor's clinic.
An ambulance took him to Starship Children's Hospital.
On March 26, two months after admission to hospital, he underwent five hours of surgery to tighten two valves that were leaking blood from his enlarged heart.
Kuli chokes up as he recalls his son's surgery: "If it was in Tonga we may have lost him. I just wish I knew more about rheumatic fever.
"I wish there was something I could have spotted earlier so I could have helped."
