Insight - Every year, up to 200 New Zealanders die from heart damage caused by rheumatic fever - an illness wiped out in many other wealthy countries. And despite a five-year campaign to tackle the disease here, rates are once again on the rise. Philippa Tolley reports.
The wall of memories of Tofi Toelupe Photo: RNZ Insight / Philippa Tolley
Listen to the full Insight documentary here
Tofi Toelupe beams down from a huge portrait above the fireplace in the front room of Molly Lepa Ogosi's Mount Roskill home. Smaller photos of Tofi, by himself and with his family, surround the portrait and a string of shells is hung in a heart shape. This is how Molly, her parents and sisters pay tribute to the baby of their family, who died of rheumatic heart failure 18 months ago. He was 15.
Molly, the eldest sister in a family of four sits on a couch in front of a large tapa cloth that dominates the wall behind her - a gift given at her brother's funeral. No one was thinking of rheumatic fever when her brother complained of a sore stomach and feeling sick. Tofi was a gentle giant with the biggest cheeky smile, she says; a "good boy" who loved playing with his nieces and nephews.
"He's a big boy, like, six-foot something, and he was huge and he'd eat for six people… So then we noticed he wasn't eating much. Some mornings he [would] just have one piece of toast and then not long after spew it all up."
Photo: Supplied
The family were worried. They desperately wanted him to go to the doctor, but Tofi was having none of it. Then he collapsed in the kitchen. An ambulance took him to hospital and after tests the doctors told the family it was rheumatic fever. The diagnosis left the family confused.
"He never complained of a sore throat. Most of the ads, they say if you have a sore throat, go straight to the doctor. But I was like, Mum, it's a stomach he's been complaining of."
Rheumatic fever is an auto-immune disease that is triggered by a Strep A infection, frequently a sore throat but not always. The illness can sometimes progress to the stage where the heart is damaged. Every year in New Zealand, 600 to 800 people are admitted to hospital with underlying rheumatic heart disease and 150 to 200 people die.
In Tofi’s case, by the time the disease was diagnosed, muscles around his heart had died and a valve was damaged. "They told us that if we had bought Tofi in earlier it wouldn't end up like that, “ Molly says.
The news was devastating to the family and the surgery to repair the valve was touch and go. But Tofi pulled through and was trying to lose weight to get ready for a heart transplant.
It was not to be. Tofi collapsed at school and, although paramedics managed to revive him, the teenager died on the way to the hospital.
Insight is on Apple Podcasts: subscribe and give us a review - Or head to Spotify or wherever you get your podcasts.
There’s no record of the total number of New Zealanders affected by the rheumatic heart disease, but last year the number of new rheumatic cases was 188 - most of them children.
It’s almost the highest figure in a decade, while in other wealthy countries like the US and the UK, the disease has been all but stamped out. What's disappointed those in public health the most is that the numbers have risen despite a five-year push to reduce the rates.
The campaign under the National-led government’s ‘Better Public Services’ banner involved raising public awareness through advertisements urging families to take sore throats seriously. In the areas where the rates were highest, health officials set up throat swabbing clinics in schools.
Experts trying to tackle the illness often use the word "shame" to describe how they feel about the fact this disease is on the rise once again. The housing crisis frequently emerges as a contributing factor.
People living in the Counties Manukau District Health Board area have some of the highest rates of rheumatic fever and the DHB continues to receive some Health Ministry funding to support rheumatic fever prevention work including a school based throat swabbing programme.
The DHB’s public health physician, Pip Anderson, says rheumatic fever rates have risen in the area for the last two years, despite efforts to eradicate it. She says there are questions over whether a change in the prevention programme has reduced its impact, or whether other factors such as the housing crisis had overwhelmed the ability of the health system to reduce rates. The DHB says it is in the process of reviewing its approach.
Wellington Cardiologist, Dr Andrew Aitken, sees patients with rheumatic heart disease almost every week. Photo: RNZ Insight / Philippa Tolley
Even for those who survive, the effects of heart damage from rheumatic fever are serious and long-lasting. Wellington Hospital cardiologist Andrew Aitken sees patients who have suffered rheumatic heart damage almost every week. The most common damage is to the heart valves, which means they don't open and close properly, making it hard for the heart to pump blood efficiently.
Dr Aitken and some of his Wellington colleagues conducted a small study themselves, of people aged 15 to 25 who had been diagnosed with rheumatic fever. “Twenty percent of them had needed to have a major cardiac operation before the age of 25, “ he says “That's a pretty significant number in itself, not only for the burden on them, but the expectation is that if they've had surgery at that age, that's only the beginning of their journey, that they're going to have ongoing chronic health problems and, very likely, a significant proportion of them will need to have further surgery in due course as well."
Molly Lepa Ogosi is adamant: whatever the problem is - a sore throat, a sore stomach or a sore back - get it checked out. And if it doesn't get better, go back to the doctor, she says - make sure it's not just dismissed.
Otherwise, the possibility - all too real for Molly - is that other families might be left with only photos and memories of a loved one lost to rheumatic fever.